Lest You Think I'm NOT a Ray of Freakin' Sunshine

Okay, I won’t link back since I never break up posts on this site anyway, so if you’re really interested, you can just scroll down a few posts… But as you all know, I have talked about how I feel about things not having to be motherloving hunky dory constantly when, you know, they aren’t. I think it’s good to be honest with yourself, and to not feel as though it’s weird to feel badly over a nasty situation.

That’s also why I think that it’s good to keep in mind that you also do really make your own happiness. That sounds like more of a disconnect than it really is. I mean you really can’t rely on anyone else to make things better for you. People can sure help making things better for others, but really, as an individual, you don’t have much more say over that than — well, if you lose your left eye, your spleen, and a large portion of your right leg in a freak clown-pie-fight-airshow-collision-meteor shower accident. Lots of random stuff can happen, good, bad, or otherwise, and you don’t really get much say in it, beyond how you react once you can think, and then ultimately how you deal with it. Even long term, that can be pretty limited. so it’s good to realize that really you answer to yourself.

It means that you can have an impact on that little bit of your life you do really have a good honest say so over. Of course, it means kinda tough stuff like you can’t blame anyone for your own dumb mistakes, but I’ve always found it’s harder to admit to myself that I’m acting like a big fat ass than it is to someone else. So then telling everyone that you screwed up actually gets a little easier. I think what’s a lot harder is to cut yourself the same sort of slack you’d give other people if they screwed up in a similar way (and probably, if they haven’t, they have some sort of mess in their history that halfway relates. I mean, if you’ve met someone who says they haven’t royally screwed some pooches here and again, they’re lying.)  But I guess that knowing that I have some say over the state of my own internal happiness helpful — I mean, it is a lot more helpful than shutting up about any concerns or trying not to think about the fact that bad things can happen. They can, and acknowledging that doesn’t mean that they will for certain or that I believe they will.

Let’s put it this way: For me, anyway, being honest with myself makes me happier. And that ultimately gives some sort of control in a situation that isn’t controllable.  And yes, friends, I am a self control freak. I think I must be. I think it’s why I hate the cloudy brained “behind the eight-ball” feeling.  It’s why I don’t get why the hell anyone wants to get drunk or high, actually. No, I mean, the idea of a buzz is disturbing. I probably wouldn’t feel that way if I actually had an on/off switch that didn’t stick in standby most of the time.

So there. Be nice to yourself. But not cause I told you to be. You know, you can be nice to me, too. I promise I won’t give you a third degree burn. Swearz.

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Speaking of Garlic and Cheese Overload…

You know the other day when I was so poetically sharing my thoughts on bacon, cheese, garlic, and the idea that it’s just not okay to say certain things to doctors (or hey, some folks in general)? You don’t? What’s your malfunction, then? Upshot is, in general, knowledge is a good thing, ignorance does not protect anyone, and sometimes shitty stuff just happens and you are well within your rights to express disappointment, frustration, and general pissed-offedness about it when it gets to that point. Emotions — positive or negative — are valid, and feeling either way periodically is just fine. Even a slight bias in one direction or another in a particularly crappy (or not at all crappy) situation is pretty expected. It’s when it’s all one-sided emotion — or none at all — that’s freaky. And boy howdy, that sure as hell goes for happy. Actually, maybe it especially applies to happy. (Shudder.)

I’m not alone on that front. Today I picked up Barbara Ehrenreich’s Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America for my Kindle. (Hey, I never talked about my Kindle. I love that thing. I can read again — although I know now that my previous difficulties came from eye fatigue and (sadly, pathetically) the fact that holding a book open took most of my brain processing skills, so reading was a distraction. The Kindle helps that so much,) I thought the book would probably take on the positive thinking mantra that companies push down in training seminars — maybe it does later, haven’t gotten that far yet. What Ehrenreich starts off with is very familiar — well, familiar enough.

When diagnosed with breast cancer, she found that by and large the medical profession, support networks and general public were very much in tune with the “this is a blessing in disguise” way of thinking. I’m going to echo her sentiment, because it works for anything chronically sucky: No, it isn’t. It’s not a blessing, and I don’t want the wonderful insight it has given. I should be able to share that, and discuss my legitimate concerns about what the worst case scenario might be (even if it’s on the outside chance) without guilt with health professionals (I understand why family members and friends might feel uneasy on that front. I mean, it does have to be faced eventually, whether that comes to pass or not, but it makes loads of sense why that takes some adjustment time all round). I should be able to get mad about it. I should be able to say this without it being treated as though feeling regret over being ill is somehow — a failing that needs to be obliterated, rather than acknowledged.

And acknowledgement doesn’t even mean saying anything, sometimes. It doesn’t mean prescribing anything — not drugs, not therapy, even, necessarily (I mean, I do see some value if you click with a support group, but I can see where attending one could actually be — depressing).  Acknowledgement just means you listen.  I love it when my sweet GP says stuff like “Well, your parts that work are fine, and I wish we could make the shitty parts stop…” One, because she says naughty words. Two, because her actions (and she has been heroic, really… where few dare to tread) speak louder than the words, but the words mean a lot. There may not be a whole lot we can do, and it may or may not have resounding success when we find the best course of action, but we do have to try. That’s fine. She doesn’t have expectations that I’ll feel like I’m letting her down if they remain unmet (because I am not the only patient who has felt like a letdown, I know), and she knows damn well that I’m not expecting miracles. I’m not. Ultimately better days than this should outnumber days like the ones I’ve been having, but if it doesn’t happen — I just need someone who is thinking objectively, and who knows me and my peculiarities, to help get to where ever it leads with the least amount of bull to deal with from illness, side effects, other medical professionals, and my own silly innards.

Of course, I hate having to talk about the nasty bits when I don’t feel like it either, when I want a dose of positive, but then I kinda choose not to talk about this sort of crap at all, then I’ll go and try to have a conversation about hot air balloons and sail boats and Mecha-Godzilla (or all three at one time) with someone. But as Ehrenreich says, you’re expected as a patient to be a fighter (like you have a choice) and ultimately a survivor. It’s why no one ever dies after a wussy, girlie, half-assed fight with some horrible condition. They are always brave. They are, especially given that most of the time, no one wants to really discuss what they are going through, how it could end in less than wonderful circumstances despite everyone’s best efforts, so they have to deal with that alone. So do close friends and family — in their own way. And that’s just not right. It’s not conducive ultimately keeping everyone healthy in the long run.

Sometimes there is nothing anyone can say or do. That’s all right. There are no words, often.  You can say that, and when you do, and it sounds lame, you all should know it’s okay to say something else. Something about dirty,  hairy hippies being mistaken for sasquatches, maybe, or how Gamera is the best monster ever because he’s a big flying, flaming turtle. That is at least genuine. Because there are no words. Silence is okay, but it makes for dull phone calls…

Anyway, it was really cool to hear a smart, engaging lady say something that I’ve felt far too often. I have doctors that I have seen that I swear have an Astra-Zeneca Magic 8 ball with motivational sayings to hand out to patients… Before they see me, they ask the pharmaceutical-branded Magic 8 ball what the overall positive feeling they should impart at this appointment will be — overwhelmingly, I get the “most important part of the cure is the patient.”

Right. Otherwise, you’ve no one to use your 8 ball on.

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The Grass is Greener When You Keep the Cats Off Your Lawn

Well, okay, I know Penny and Norman are quite capable of killing patches of lawn (well, maybe not Norman, he usually manages to lift his leg on Penny, or me, or a squirrel or… it’s uncanny), but there are few things that are as nasty as cat spray.  One of those things would be snake vomit — believe me, smell it once, and you can go in a room packed to the gills with poo-flinging monkeys, completely pissed off skunks, and a few warring tribes of badgers and porcupines, and if a snake has puked there in the last week, that’s what you would pick up on first. And the other distinctive stink — if you’ve ever been dehydrated, really dehydrated, you’ll probably know what I mean.

The odd sensation — it is not exactly an odor — that there’s been a massive ammonia spill somewhere in your nostrils.  I just am kinda thinking about that because of Bret Michaels described “minor setback” — hyponatremia — that occurred after his major ass setback known as a brain hemorrhage.  Let’s put it this way: that’s what happened to me shortly after the old thymus was pulled, and I imagine that  if you’ve already had your brain bleed out that a really dangerous situation such as that can become potentially deadly even faster.

And man, when doctors say they can tell low blood sodium when they see it — they’re full of it. I mean, because if you’re convulsing on the floor or suddenly in a coma or go into cardiac arrest — I don’t think that counts, really. I love my GP because she didn’t really think that was going to pan out like that at all (nor did she claim to), but she knows me enough to realize that if I didn’t think it felt right — and it didn’t feel like the normal “after a procedure” unpleasantness, it probably wasn’t.

Anyway, was never a fan of hair metal, but you’d have to be an ass not to feel for someone in that situation.  Especially when something that can cause seizures that go status quickly, and can lead to coma and death if not corrected in a timely (yet responsible) manner is described as a “minor setback” in light of other conditions. I feel for everyone there, patient, family, and medical team. Because you can’t even go and right that level too fast…

If I worked in medicine, I’d want to be a pathologist. You can sit disconnected in your lab, lighting up cells with radioactivity, snake venom, lamb’s blood, tongue of dog and eye of newt. And you have neat gadgets. You’re like Spiderman and Batman all in one.

Meanwhile, in my world… Waiting to see a dermatologist, and my sweet GP is annoying the oncologist again (I feel like a jackass, will that poor man be rid of me?) on how to approach testing for a set of disorders that’s not a cancer per se — it’s an immune screw up — but it’s not an immunologist thing. Sometimes dermatologists deal with it, but not usually.  But usually hematologists deal with it, even though it’s not… Let’s put this in librarian terms: it has MeSH headings that refer just about everywhere, but as the classification is refined in each category, it is clear it doesn’t belong strictly in any of them. That about sums up why this has been a challenge to get dealt with, even when all the doctors started agreeing wholeheartedly something was very wrong.

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Heresy, Blasphemy, and You Can Use Too Much Cheese and Garlic

It’s true… I think cheese food products (or cheese food, or cheese in general) are often overused. Garlic is too. And chocolate… Dudes, chocolate cake, with chocolate ice cream, and chocolate frosting, delivered via chocolate-flavored forks is just damned gross. Then, I’m one of those freaks that thinks chocolate is best when it’s in its true “chunk/bar” form (not a cookie, cake, or dairy product) and wonders how something can smell as wonderful as coffee does and taste as absolutely hideously craptacular.

I would imagine that it’s even possible to overdo bacon. I like bacon, though, and I don’t want to have these feelings about it like I do about cheese and garlic.

I didn’t really want to talk about food. No, really, trust me, I don’t.

But there are lots of things you shouldn’t say because they’re not acceptable in a doctor’s office — in the doctor’s opinion. And I’ve wanted to, but truthfully, I know I feel like an ass saying them. I shouldn’t, though.  I think part of why it’s so damned hard to say much to doctors is often because they’ve been trained to think that any emotion that isn’t positive in nature — or (gulp) completely neutral — is the sign a patient is depressed, or not dealing with the problem well.

First — when I am apathetic, you all better worry. Lack of emotion, bad bad bad. And I’ve just started telling doctors that I feel no need to apologize for feeling what I feel. It’s valid. You can’t handle it? Get a new profession. It’s okay (and not necessarily clinical depression, or even sub-clinical depression)  to feel sad over a shitty situation. In fact, I find periodically, it’s good to have a nice pity party. After an hour or so, it gets really old, and it’s out of my system, and I can think about what I can do next.

It is a bummer that doctors started equating anything that wasn’t overjoyed bluebird-esque happiness with depression. Depression is a horrendous thing to deal with, believe me. But start diagnosing it every time someone sheds a tear over an admittedly unfortunate situation, you might be causing them damage, and you’re definitely making life a lot harder for people with depression.  I feel the same way with how easily fibromyalgia is thrown around. I know it exists, and is a real problem — a really, really horrible problem — for some people. But I know that doctors throw it on things that it doesn’t fit, and that sells everybody short. Especially those who suffer from it.

I don’t, by the way. I think you could poke those tender points with knives and there wouldn’t be a reaction. You don’t want to know how many times I heard I had it though. It’s an answer, and better yet, it’s one no once can treat really effectively (especially before things like Lyrica and stuff).

I think that we need to throw out the word “fatigue,” because it has no meaning. Pain really has no meaning, either, though, because even when I don’t feel pain or describe something as painful, it gets worked in there. Lots of things that are nasty don’t hurt.

Like, um, cancers, for instance. Sometimes they do hurt from day one, I guess, of course, but not always.

And other things I can’t say: When a doctor says, “Be glad it isn’t….” or “You don’t want it to be…. do you?” (I really love the “do you?” part.)  I want to say, “I don’t want to be here to start with, so I’m not sure I have a choice in the matter.”  There are a few things medically that scare the living crap out of me: two I know I don’t have, and one’s already happened (and my fear was justified).

I have had nothing ruled out that gave me such comfort as knowing I don’t have ALS, and it’s not early onset-Alzheimers.  Those two rule outs were truly great to hear. I know why Alzheimers scares me (same reason being foggy does, I hate when my brain won’t go) and ALS is a similar thing — my brain is telling my body to do stuff, and it won’t, and dammit, why not? Having had it happen (for some other reason, thankfully) it is a really unnerving feeling. And the thought of it getting progressively worse with little they can do till you die three or five years (or in Stephen Hawking’s case, decades and decades) later is scary. I’m not sure whether the prospect of a short time or decades is scarier, actually…

The other thing that scared me was low blood sodium — it’s why I was freaked out when I started dehydrating so easily, why I was so adamant they find out why I kept peeing and drinking. It was unholy, and it was one of those things that I heard as a kid could kill you…. You know, an impressionable young teen hears that you can die from having too much water, but you’re made up of 98% water — holy crap, 2% more water in my fleshy bits’ll kill me! Of course, the diabetes insipidus (and treatment) didn’t make that happen, per se, it was the shock of that surgery. I think the fact I was so conscious of what it could do that I got it straightened out before really bad things happened. And since my pituitary has gone back to its lackluster anti-diuretic producing  self, it’s a little easier to deal with.

But those things scare me — rationally or not — and everything else is… Well, there are lots of things that can kill you that aren’t cancer, swine flu, or meteor impacts. That’s all. Try saying that to a doctor. It’s like saying is more to life than merely having vital signs.

Anyway, the verdict is I get to wait for another flare up of something fun and we’ll run more tests with the immunologist. I also know we didn’t test for something that was brought up last summer, but it was put off because of the rarity of it all and the tests are more invasive. I also learned this month that this family of disorders is very much associated with central diabetes insipidus, and pulmonary growths, and looks pretty unspectacular on blood tests.  I was told they might consider testing last year — before I developed the DI. The problem is that it’s so beyond the pale, my GP has some work cut out finding someone to really fill us in on how to proceed with testing and so forth.

And if someone wouldn’t wish something on their worst enemy — they aren’t suffering enough. If I could dump this on anyone else, I would, with the exception of two or three people. I can’t, it’s a pointless exercise really, but when you say it, people are often appalled. Sorry, folks. I don’t really want anyone to have to have it, but I really don’t think I should either. Stuff happens. I’d be happier if it were happening to someone else. Sue me. Because if you didn’t think similarly in this sort of situation, you’re probably not being completely honest with yourself. Just saying. I gotta be honest. It’s where my charm lives. Bwahahaha.

Bacon. I could use some bacon.

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Okay, Sorry

You might have noticed that there was a database error up here recently. That’s cause ultimately somewhere, some of Dreamhost’s mysql servers flubbed up (by the way, Dreamhost wasn’t my choice, but there’s roundabout ways I got there). And it’s kind of interesting, when they came back, either what they restored was an old config (doesn’t look like it) or they actually changed the name of the server the database is on. To… well… I have no idea why the hell I didn’t get the memo, but truthfully, it’d mean I read the memos to start with.

Anyway, better now. Well, this is better. Other stuff… We’ll get there.

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TypeO Positive, Dudes

Wow, I happened to look at the post I threw up the other night. Interesting point:  while I was posting said piece, Norman the tibetan spaniel was, in all reality, throwing up. Mr. Shoe was coming through the door with his dinner after a visit with his personal trainer, and I was in a race against time to get the barf up and out before Mr. Shoe had to see it. He doesn’t do well with that sort of stuff.

So the typos are understandable, I guess. Just didn’t imagine I’d see that many.

When you see a doctor who is willing to spend three hours with you, and work through his lunch, and he shares that he’s lost lots of weight by eating every two hours or so (not as a hint, as an incidental), I can say that he held up damn well for someone that was obviously getting cranky due to low blood sugar.  But I am glad that the lab techs figured out the test that he ordered from Mayo’s “send us your tired, your soon to be poor, your patients who need weird blood labs” test facility, because I think if they’d interrupted him before he could scarf down a cookie and an orange juice, they may have needed the emergency room next building over.

At this point,  the most heartening thing to take away is that there’s a guy who specializes in immunity who is intrigued and interested in following along. While I hope to hell I’m surprised and this is figured out on the order of weeks as opposed to months, I think the possibility of this going on as an unknown quantity for several more years is really unlikely.  I have my ex-thymus to thank for that. Because believe me, when most doctors worth a damn hear that one, they do take notice.  I mean, even if it’s “I know it isn’t the stuff that falls in my jurisdiction going on that can be related to that, but I’d be really curious to know what it is that they find…” because it all points to a screw up with your immune system (things like myasthenia gravis, are neurological manifestations, Addison’s and Graves are endocrinological, and then, of course, there’s the weird anemias and deficiencies that are associated with naughty thymus glands — all start with immune problems of some sort, or even further up the lymphatic/bone/blood production line).

The only doctor who really didn’t give a crap was the one downtown who is, oddly, also an immune guy. But before either of us knew I had the thymoma, I’d already figured out that he wasn’t worth a damn.

So as far as active impact goes: enemy sighted.  Well, mostly. Battleground sighted. I am encouraged that his remarks about the fact I had no sign of auto-immunity on my labs was followed by, “And no sign of… inflammation. Oh.” Usually I hear it said as though it instantly dismisses the idea that anything is wrong — even when the doctor ordering the test saw outward evidence of inflammation (swelling, redness, heat) or when there has been evidence of infection in the same lab reports. He said it like… Well, like it wasn’t exactly normal, but that the possibility of these things occurring isn’t completely bizarre and isn’t what you could immediately call insignificant.

I still think I have a wait ahead, though. I can’t say I’m honestly holding my breath over the test results — while I feel pretty craptacular, it is not as full tilt as it has been, so even if this line of testing shows little now, it might later. There really are so few tests that are truly diagnostic, and none of the few truly diagnostic tests are for this stuff. But it gets us closer, and certain combinations of results point out directions. It is painfully slow, though, and it completely sucks to hear that I might have to wait for it to hit the fan again before we can explore further, or even if tests come back oddly, really confirm what’s going on. So I have a lot of weird, objectively measurable stuff going on, but in an area littered with diseases characterized by weird, objectively measurable stuff that it still seems as though these signs become the ubiquitous “flu like symptoms.”  But at least my quirky flu like symptoms take me out of the larger “flu pool” and into the hot tub of weird, related disorders.

It’s odd, because a quarter of the time I feel like I want to skewer the medical profession, but mostly right now I feel like I am obliged to — apologize on their behalf. I get it, this is a difficult case. I am not kidding when I say (to doctors, family, friends, the street sweeper guy) that there is a lot of stuff here that on first glance makes no sense, on second look makes not a damn bit of sense, and then you really have to think about what the hell all this stuff has in common.  And given the fact that immune things are slow to manifest, tend to look the same at opposite ends of the spectrum, and tests don’t always accurately reflect what it is doing at any given time beyond “overdrive” or “underachiever” and sometimes, I’ve gathered, the over/under active modes can be carrying on simultaneously — it ain’t a job I’d want.

I guess the sad fact is, there is no one to blame and for some reason, we all always want someone to pin it on. Oh, for certain, I am pissed about all the doctors I’ve seen who have been dismissive right off (and there are more than a few). I am annoyed that some had good ideas, and when they didn’t pan out, it was easier to suddenly take what information had been gathered and say that it was meaningless, and there’s nothing wrong at all. Look, I’m an adult. It is hard to hear you can’t help me because you don’t have the time, energy, or hell,interest in my case at this point. But if it’s the truth, tell me. Because it’s better than hearing I’m fine when we all know I’m not. And it takes some real faith in yourself as a human being to say it to a patient, I’m sure. But I’ve heard it was in my head way too many times when it was clear that even the doctor saying it didn’t believe it.

But even though the journey thus far has felt way too long, and isn’t over yet, I can’t say any of it is necessarily the failing of the medical profession.  In a perfect world, with every doctor having oodles of time, and getting paid oodles of money, and insurance not being an issue ever for anyone,  this would still happen to some extent. All else aside, we don’t know nearly as much as we think we do. So I say we fund science and technology education at all grade levels and encourage more college kids to pursue careers in research. Some sort of answer, with some sort of solution is out there for me, and I will get there.  Of course, I’ll send you all a postcard when I do.

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Fastest Post Ever.

Eva!

Saw the immunologist. Nice guy. I mean, a doctor that will say, “Can you guys hang around while I see these other people because I want to get a real detailed history” is okay in my book.

Because I wouldn’t trust anyone who’d be able to pull an answer out of their posteriors at first glance, I am encouraged that we still don’t know much, and that we’re rephrasing the questions. I have a dumb immune system. Is it dumb in the way we were thinking? Is it dumb to one or two core things and then it rolls downhill? Damned if I know. If these test come back with something less than normal, we will have a little more clue (but mostly we’re falling into the “umbrella for a spectrum” area then… I don’t care. If it’s an umbrella that they are able and willing to deal with, that’s all that matters).

In the very real event they do come back normal (incidentally, I think this is the same test they would have done if they’d worked the thymus up beyond “cancer” and “not cancer”) I get to wait for it to really balloon again, and then I need to call him. Because many things you really can only get a read on when it’s full swing. But he’s there, and is willing to follow as we go — and I hate the idea of waiting for the next one, it helps to know there’s someone with an immune system background watching on as well.

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Oh Hai. I Made Me a Birfday But Life Eated It

I have renewed faith that there are plenty of doctors who care a lot even if they can’t help, and I have renewed faith that really, we don’t know anything at all.  Just most people have stuff malfunction in the same sorts of ways.  Know how teenagers want to be different, but still fit in? The hell with different, I wish my carcass just would… get some plebe cold or something.

And as we learned in library school, the answers you get depend on the questions you ask.  So here: Monday I saw my sweet GP and I got a call from the oncologist. I am scheduled to see a guy — an allergist — that my sweet GP says is far more immune system keen than a straight up allergist (I had two years of allergy shots as a kid — I know that allergists classically either beat around the bush with treating things or, like the one I had, say you need to live in this reality in this world, and deal with it). Anyway, he’s another member of the unholy trinity comprised of Allergy, Immunology and Rheumatology.  Sweet GP rolled out the typical “really smart” (doctors should be, but smart only goes so far) and a nerd. I like when she calls other doctors nerds (or hardasses.  That’s even better.).  One, she consistently qualifies nerd as “not a bad thing.” (I think dweebs are bad in medicine. Dorks are par for the course, and geeks always kick ass.) And every one she has referred to as a nerd I’ve gotten on well with and felt like they were giving it a go.

So I see the immunologist in a week or so.

When I saw the oncologist last week, he said that he didn’t think it was an autoimmune issue or cancer — citing no positive labs for ANA and such. He said he’d ask  the pathologist what all was done, and what any differentials would be, but he felt it was probably a fluke.

Thing is, immunology is a field that changes rapidly. In the 60s no one was 100% sure what the hell a thymus did (and we’re still not) and it seems like medicine makes leaps and bounds and we still know jack. The oncologist said my thymus was removed because it was oversized — this is true. It wasn’t a tumor, it was just big. The pathologist said that yes, it was bigger than it ought to be (the anesthesiologist said the size of a baseball, which makes me wonder if he grew up in a place with really small baseballs). It was made up of thymic tissue (which you expect) and follicular b-cells (which they say should be there to some degree, though t-cells are usually associated therein). It was the fact that there were boatloads of follicular b-cells (hyperplasia) that made my thymus grow, the pathologist told the oncologist, that was abnormal — and that that means there is an autoimmunity problem (though no one knows what that link is and why it happens).

I am thinking the pathologist (and surgeon) probably see more of those from people with an autoimmune diagnosis already, so it was assumed on the pathology guy’s part that I was diagnosed, and the surgeon wasn’t going to hedge his bets. And it explains why the oncologist was confused. The oncologist took back his doubts it was an immune issue, and said he was sorry he couldn’t be of more help and he hoped it worked out soon.  Honestly, his giving a crap enough to ask the pathologist, follow up, and taking the time to clarify and rework what he’d been thinking previously means the world to me. That helped.

That was Monday, which was. coincidentally, my birthday. Hearing more about what was looked at and what they saw but didn’t work up further on the path labs was a gift in and of itself (and tissue samples are on file if someone can figure out what the hell they might want to work it up for). For now though, I’m taking a rain check on most holidays and anniversaries. It’s just easier that way.

But I think everyone ought to eat some cake on my behalf.

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Please Note, Patient was on Fire When I Got Here…

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.

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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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