The Abdominable Snowman

Okay, maybe it’ll be an abdominal hurricaneman… Tomorrow I get to take the extreme happy fun time voyage to DFCI/Faulkner Hospital in Jamaica Plain (which is a pretty ride, but is really curvy, stop and go, and still fast… so I like to look out the window, and it’s kinda nausea inducing). I first have the honors of a full on skeletal survey (which is straight up x-rays of every bone I have, and possibly I few I don’t…) and then a CT of my abdomen. I know something is going on there, I have no clue what it will look like or even if it will be easily spotted. And don’t ask how I know… I mean, there’s some tell tale signs I guess (and it’s part of the work up anyway). It just hasn’t felt right for a while. It isn’t pain, it’s just like… It’s a case I think might be like when I was being worked up for “shortness of breath.”  I kept saying it didn’t feel like I couldn’t get air in my lungs, it felt like there was something not letting my lungs really move.

Of course, that’s just silly talk. Until they found Don Thymus and removed him. Now I can say I do still have shortness of breath on exertion. It’s in my lungs. But it’s clear to me now my lungs have some breathing room where they didn’t before, and it was a real problem.

After the fun happy test time, I get to wait over the long weekend (at least it won’t be 97F like it’s been) and pop back on up to see the good folks at DFCI on Tuesday. And you know, as much as I would love a clear cut path to get cracking upon, it’d just be awesome to get cracking.

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It's the Little Things…

Is it me, or is the earth rotating faster? And that jerking motion… is the planet jammed on some space junk or something? The last two weeks have been interesting (and not only for me)  and I think it’s only going to get more interesting from here. In my case, I hope so — I mean, there are limits on the nature and amount of interestingness I would be okay with. I think most other people I know who have their own conundrums feel quite a bit differently.

And because I know there are some people in Florida and Pennsylvania wondering, no… I mean, Momshoe is always interesting, of course, it’s why we love to see her… But her visit is most definitely not the cause of the earth’s rotational skew. I swearz!

As I try to connect the dots and work out the play by play analysis of my visit to Dana Farber (because you do… it’s the post game tradition once you see a specialist who seems interested) I seriously suspect he has an inkling of what is going on, but it is really important to be sure before you venture that kind of diagnosis and treatment. And even when all the quirky stuff goes on that suggests the diagnosis,  the pathology doesn’t strongly confirm or deny much. A resounding meh from a biopsy of a trouble spot can coexist with a positive means of identification somewhere that looks or seems nearly in normal limits. I guess it’s why medicine is fascinating. It’s also why it sucks. And I would think that even if it weren’t me we were discussing… I still maintain most doctors become doctors because they are inherently good, bright people who are genuinely interested in helping people feel better and live better lives (and I have seen my sweet GP get so excited because she saw an abscess to lance and “it’s so gross, yet cool and I love it, and it makes it feel a million times better immediately.” So the ewww factor is a driving force. Otherwise… c’mon). But I know a great number of things don’t just announce their presence, and even when they do… There are always little wrenches that can make the stakes quite high.

I know doctors are competitive souls, too. And they don’t like to lose, which is rather hard to reconcile if you look at it as though living is winning and death is losing… and I know that med schools don’t encourage that view, but it’s almost hardwired into people, at least, here and now.  The presence of vital signs aren’t what defines life, but trust me, as a younger patient, all some doctors feel I need to know is that I am not going to suddenly not have vital signs in the next few days/weeks. That’s lovely and all, but I kinda guessed that. I would like maybe some life though.

Anyway, I know that this doctor thinks something is up, and he is prepared (and is preparing me) for the idea that even though there’s this particularly unusual stuff that points to a histiocyte disorder of some sort (there are a few that could fit) it doesn’t mean that it is going to just bust in and announce its presence like Oprah at Harpo Studios. It feels like it has, and that’s scary on more than a few levels, even without invoking the Oprah image, but we might find (yeah, brace yourself) Martha Stewart in there.  If we find Dr. Phil, though, Mr. Shoe has orders to pull the plug.  That’s the only humane thing to do.

Unrevealing tests are expected. Sort of. I actually think we might see something in the abdominal CT. It’s a really long story, and one of those that makes me think first that I’m a friggin’  unobservant idiot, until I realize that it’s more like hindsight is a big bitch with awesome visual acuity. Either way, there is some relief in that I feel I am in the right specialty now, even if it takes time or turns out to be some other sort of hematological/cells gone wild disorder.  It still sucks and it will suck… and even when managed successfully, believe me, it will probably seem a boatload of suck to the outside world.  But there’s sucking and feeling as though you’re somewhat at the mercy of what it wants to do and there’s sucking and feeling as though you have some ability to influence the course it will take and impact that the disease and managing it will have. You don’t want to be in the suck boat, but if you are, it is nice to know the captain’s wheel is at least sometimes communicating with the rudder.

I am in an interesting place though…  My fear going into the visit was that it was just going to be another run around. Or that I’d feel like he’s pursuing the idea seriously, but if it doesn’t pan out, then I’d get the brush off… Believe me, I am pretty good at predicting the brush off (it happened once or twice… It is devastating, because at least the last time around, the workup was logical, new, and damn good thinking — and the doctor was so sure that she couldn’t get me out of her sight fast enough when I disappointed her).  Nothing is giving me those kind of vibes. But the fear isn’t that I’m going to hear something dire. I mean, I wouldn’t want to, anymore than it’s kind of not a good position to be in to start with… But going there and hearing that this is going to probably suck massively from time to time, but isn’t something that we can’t try to deal with wisely and see some decent results is a relief.  Modest improvement is still improvement, and trade-offs might need to be made to see those, but fine.

I have a family member who just had the news sprung that he has a fun filled journey ahead with lymphoma. I think that’s got to be one of the worst things to just have crop up. I mean… Jeez, I have a lumpy thing here. Better just be careful and have it looked at, it’s nothing,  c’mon, stop worrying about it… and then you get that dropped on you just when you think, “Yeah, the biopsy was fine, they’re not calling me back even…”

Is it better to be ready for what’s going to be tossed your way after a long course of crap like in my case, or be somewhat blindsided (or worse, hindsighted) by news like that?  What an absolutely frickin’ stupid thing to be debating the merits and drawbacks to… but people do it all the time, even when the stupidity and futility is recognized. Okay, I wonder about it. I personally can’t say I’d like surprises along the lines of “we thought it was a pimple, but you have cancer” any more than I liked the non-surprise of yet another normal blood test or imaging study while feeling like I have.  Maybe knowledge isn’t necessarily power in either case, but in both instances, ignorance sure as hell isn’t bliss. Maybe that’s all you can really say about it…

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Worth the Trip? Yep.

I was going to actually just write a note to my mom, but you know, it’ll be put here anyway and I’m burnt. Also, isn’t everyone a mother somewhere, y’know, deep in their souls? You can feel free to add a suffix to mother if you want, because it still holds true in most cases.

Let’s just say the trip to Dana Farber (which was actually on the Faulkner Hospital campus for me…) was productive. First: Faulkner Hospital has some clean freakin’ bathrooms. However, my brain was slow as hell today, so I had a hard time working the first toilet paper dispenser and I fear I may have broken the second one. Sorry.

The DFCI office there had that whole MGH vibe — I knew it would. Truthfully, it’s pretty rare to run into someone who deals with patients or the public that isn’t very pleasant. The person in question might not be particularly helpful, but they do try, and they’re nice about it all.

I had my vitals done once they checked me in, and I think I need to talk to my sweet GP about the fact that there might be a need to bump up or switch beta blockers, as my blood pressure and heart rate remained astronomical and orbiting… My heart rate was a surprise, moreso, cause I didn’t feel like it was racing. I figured my blood pressure would be high — they always figure this too. But it should have come down. And it didn’t. Like, at all. So that’s kinda not a good thing. Also not the first time I saw those numbers this summer, so I’m kind of sure we’re seeing a trend.

The doctor was great. I mean, I think he must imagine I’m a drooling idiot (actually, I’ve been drooling a  lot again, which usually means the mouth sores are coming)… You wouldn’t have known I was capable of speech in his office. Emphatic hand gestures, sure…. Word order? No, word order was a point lost on me.

He said that diabetes insipidus with a pituitary cyst and lung nodules tend to make doctors think of histiocyte disorders, and while rare, working up is certainly not inappropriate. I say that diabetes insipidus and lung nodules tend to make doctors act like poultry, but hey… Of course, here’s the kicker: they’re taking a new look at my slides, but really, he doesn’t expect that my thymus was revealing much. My lymph nodes weren’t large enough to think about a biopsy (he also said that many of these disorders will cause them to go up and down, just like infections will, but of course… no infections.)  I’m curious as to why we don’t do a skin biopsy, except that given the nature of histiocytosis (often includes skin cells of some nature) it wouldn’t be conclusive in and of itself. So we’ve got two things we could poke: my pituitary and my lung. He said he wouldn’t be inclined to do the first since it’s frickin’ brain surgery, and removal of the cyst most likely wouldn’t even get rid of the diabetes insipidus. Like the thymus, it’s also not terribly indicative all the time of what’s going on (other than it shouldn’t be there) and is risky being frickin’ brain surgery. I’d rather not have them do that. Ever.

The lung biopsy would be fairly involved as well… Potentially more revealing, but a smaller version of the thymectomy.  Believe me, through the ribcage surgeries — however minimally invasive — are really invasive.

But I’m going for a pelvic and abdominal CT in early September, given the fact that I feel like I have turtles shoved under my lower ribs whenever I get dehydrated (which is often) and while I sure can pee, I sure can’t do without stopping and starting. Masses outside of the organs in the abdomen are often found with this stuff, I guess. Since long bones are involved often too, he ordered a skeletal survey (same time). Then we talk.

If we see something, it’ll get looked at further. But the vibe I get is that this is a decent enough suspect, but can remain one in a very spectacular manner for years and years before pinning down. So I am to get follow ups yearly on the brain MRI, and my chest (of course, I was supposed to on that front… I said, “So what… thymuses grow back?” Yeah. They can, if they decided to go all rogue in the first place. Awesome.)

The trick is to make anything invasive count. I’m fine with that (I said I just draw the line with my brain, I really can deal with the rest, if it actually makes sense to do). So for now we’re looking at the most likely affected areas one sees with this sort of stuff that we don’t already know suck ass and remain off limits.

In the quite likely event (his words, and I can’t argue with history…) that we see something odd and it tests inconclusively or we see nozzink,  there is still something not right. And you don’t just walk away.  Since I was helped by prednisone a bit in the past, he is willing to make the case to prescribe it to my current doctors (I think my GP just wants the backup).  It doesn’t mean that it isn’t a histiocyte related disorder, it just means they can’t say so for sure… and they want to say so for sure because treating those, in his words, makes prednisone seem like a walk in the park. But the key is that something needs to be done to keep quality of life somewhere on the actual quality of life scale while minimizing prednisone side effects while we see what develops.

I get the sense there will be developments, however slow and scattered, either way. I get the sense he thinks this (like I know the doctors who know me here do) but there’s no damn way of telling what is appropriate until something goes awry to confirm what treatment is best and how aggressive it ought to be. Right now, he thinks prednisone’ll be a decent candidate should nothing else be clarified directly.

So it ain’t happy news, but the long term prospect of sitting here like a big pile of human laundry is far less appealing… Thankfully, it looks like it won’t be my fate no matter how testing turns out.

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What're You Thinking?

Who let YOU out, mama?

Penny wonders this all the damn time, folks. Mainly because she thinks it must be something awesome. I am not sure how to break it to her.

UPDATE: I figure any day I wake up feeling meh about a particular event, but bull and bent on changing the overall situation can’t be all bad…

Prior to shipping off to see new specialists, there’s always a typhoon of different thoughts. The only constant is the hope that it’s worth it, and fear that I’ve just wasted energy I don’t have on someone who is unable to help (or worse, can’t say so nicely or feels as though it’s okay to reflect what I imagine is a fear of inadequacy back at me.) Sometimes I feel really extra hopeful, or not, or like everything is waiting on that visit.

Other times…

Tomorrow morning I’m headed in to Dana Farber, and I can say I feel pretty freakin’ ambivalent. I hope mainly I don’t get that look I get often enough… that one reminiscent of the expression poultry gives you when they realize you don’t have chicken feed. I hate that. I know there is only enough data on me to either suggest further tests, either to clarify or identify differentials. I am quite done with reinventing wheels, and I’m sure a few tests will be unpleasant and invasive.

Well, friggin’ wah. Ask me if I care about that. It always pisses me off to have my limitations smack me… My parents came down to visit this weekend. They didn’t stay here (believe me, that would have been more unpleasant for them) and I don’t know if I’m happy I managed the two hours of sitting up I did, or I’m devastated that that was all I could do. And we aren’t going into all the birthdays, holidays and anniversaries that have been rainchecked… Many people reading this have rainchecks. And (excuse me, folks) fuck all else, everyone I know and I could all have nice long, long futures ahead of us, but we aren’t getting those “nows” back.  And that’s what makes me so bullshit. I can’t predict the future, but I don’t necessarily care about the future. I care about what is right now that’s just slipping by and no one can do more than say they are sorry and blink at me like poultry.

So I can’t say I’m going to Mr. Farber’s hospital with an ax or anything, but if I get the chicken look and not much else, I’m taking young Master James Fund hostage until someone thinks of a way to help.

The buck has to stop somewhere. Mainly because my family, my friends, my sweet GP, Eddie the neuro and I deserve it.

I don’t know as I expect much out of tomorrow, except for a trip back soon to look more. That’s fine. That’s ideal. The pieces are there, we have a couple of nice colorful corners and edges of the puzzle. It could come together quickly, or it might take time. I just want to identify enough that we can do something to make good on a few of those rainchecks (and keep more from being written) while the finer points are battled over.

Got that, Dana?

Because I have people and pugs who are hellbent on having me at least somewhat functional. Hellbent, I said. You better believe it.

Hunter and Hunted

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Faster, Silver, Faster

Don’t tell Mr. Shoe. I have a crush on Teddy Roosevelt. Okay, fine, you can tell him. He already knows. I mean, here’s a guy with asthma, whose mother described his laugh as being similar to creaking door hinge, who wrestled guests in the governor’s mansion and probably planted the idea in his kids’ heads to take the pony up to the second floor of the White House in the new elevator. He was shot during a campaign speech, for the love of Pete, and then continued speaking with his spastic little gestures for another hour and forty five minutes or some such. I bet his wife was friggin’ thrilled with him over that one.

Black care rarely sits behind a rider whose pace is fast enough.

To some degree it holds true, of course — Teddy did use rarely as a modifier. I’m not sure if I’ve been an “outrun it” sort of patient or the sort who just is in denial. I think it’s a combination for me. I’d deny it was happening while trying to outrun it, and then when it caught up with me, I didn’t even recognize it as what I was running from. I get this. I mean, it makes it hard because I have no clue I am doing it.  When something gets pressed and I am asked, “Does this hurt?” I have to think about it. It doesn’t hurt per se, but I wish to hell you’d stop pressing on it now because… it doesn’t not hurt.

At any rate, I am off to see some guy at Dana Farber in exactly (jeez, almost to the minute) one week. I really hope to get from this visit one thing: further tests. I mean, there is obviously something going on. I am annoyed that the things very certainly clinically objectively identified — central diabetes insipidus, a cyst of some sort on my posterior pituitary, and a thymus that was far too large to be normal (even if it wasn’t malignant) or even stay in my chest for much longer — are often just shrugged off. The good part is they are not necessarily horrendous things in and of themselves. The bad part is they are weird, so many doctors aren’t getting that just because you don’t see them often doesn’t mean there’s not a relationship between them, or that they’re inconsequential. Maybe there’s no relationship, maybe they’re each a separate sign of something else — but they just kinda don’t happen in well people.

I think that it’s time to start rephrasing the questions we ask about what’s going on. I think that’ll probably require some nastier testing and biopsies and stuff, and that sucks, but fine. My blood work always seems to be rather unrevealing. The trick is asking the right sort of questions at that point so that we find or can say definitively what we see or don’t see in anything sampled. My sweet GP is so down with this step, and she’s been pushing for someone to poke at the beefier lymph nodes and my skin for a while. Nobody out here, however, is really able to help her get that done so that pain, agony, and time spent in either state are minimized. Eddie the neuro agrees — it’s time to stop beating the hell out of that horse we’re riding so fast and start thinking in the saddle.

And for those who may or may not have realized… You can check out other pictures on my Flickr photostream (clicking on the pictures I link here should take you to Flickr as well). Still trying to get the hang of manual shooting (darkness is not my friend) but finding the photography truisms are, um, true. Lots of bad pictures for every one good one… And saving files in the RAW camera format gives you a lot more control over the image in post processing — and  you’ll need to do some no matter what. Usually it seems color and lighting need a little help, but post processing can’t make a crappy shot look good. I do decently well with not wobbling so that the picture is blurry (though I have a lot to work out in terms of focus areas), so that’s a good start.

No Words

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One Thing Is For Damn Sure

I may feel tired and ill most of the time, but one thing is certain: I will personally kill with my own two hands and eat anyone who tries to take my shiny new Nikon… Okay, new to me… They are rolling out new models this month. If you didn’t know, cameras are kind of that one area of tech where you won’t find older models getting less expensive (especially the DSLRs), nor is there any guarantee the new models will have better/equivalent feature/price sets, so if something works for you, jump at it.  I have this feeling that Nikon will be pushing towards better video on lower end stuff (I don’t want video on my still camera, sorry) and the higher end general consumer stuff will probably be improved a little bit, but the higher end still will cost… higher end. The model I just picked up (D5000) was going out of stock and being as it’s a middle of the road entry level camera, it’s kinda unclear what will happen there, except that it had the higher end model’s specs in many respects and the ones it didn’t… I didn’t care about. It was also a decent enough price difference that it really made a difference.

It’s a learning curve, and I have the stupids much of the time, but I took some action shots in aperture priority mode yesterday (which might not have been the best way, but they still were impressive) and have had pretty decent results for someone who has no clue and a case of the stupids in full manual mode (save for the focus) this morning. I don’t imagine the built in flash is great, and I haven’t used it much. I am going to start learning the manual crap in good natural light.

I am hating changing the lenses though, thanks to my shedding hair and other nastiness, the last thing I want is frickin’ DNA evidence stuck in my camera body after a week. I almost put on the biohazard suit and hold my breath when I need to do so.

The Antisocial Koi

Dragon fly

Ivy, manual

A thrilling subject, I know:

Powerade Bottle

Just cause of the pretty quotient:

Oh hai

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In The Wake

I realize that any communication with me as of late is a often like having Joyce’s Finnegan’s Wake read to you. At bedtime. It’s tough to follow. I don’t know where I go off track, but I do. I know it, and I don’t make even make sense to me sometimes. It’s a comforting thought for literature majors: Joyce had no friggin’ idea what Ulysses or Finnegan’s Wake were about either. That’s my theory anyway.

Here’s what’s new: After capturing Eddie the neuro, darting and tagging him and then setting him free into the wild so we can better track him, we know we have no new leads. We have old leads needing further examination, though, so I did get a name of a guy at Dana Farber.  (There is a tangent coming.)  Eddie has only seen one case of histiocytosis in the past, but his feeling is the workup for such things could potentially reveal what it is, even if it isn’t one of the many diverse forms.  We’re doing a three pronged referral here, though. Nobody is real sure how they like to get referrals at the DF guy’s office, so Eddie is referring… I figure I’ll call and ask the DF guy’s office tomorrow if it was received or if they prefer (as some do, I guess) that I arrange it first. My sweet GP also is very much aware and willing to refer should the emphasis need be made.

Know what? I am so damn tired and sick of this, and tired of feeling like so much relies on any one person (it doesn’t… I mean, it can’t… there’d be far more prematurely dead people), I just kinda feel meh. I mean, it needs figuring out as soon as possible. But it feels endless in its own right. So I went to Twitter that afternoon and I tweeted this: Going to Dana Farber to see some guy who deals w/weird shit.

Later, Dana Farber rebroadcast my tweet as follows:

That’s one of our core competencies! RT: @linuxlibrarian Going to Dana Farber to see some guy who deals w/weird shit.

I texted that message to Mr. Shoe, who happened to be seeing our sweet GP for his physical (he’s doing well, by the way, thanks to the personal trainer). So our sweet GP saw it and thought that was awesome. Then, she also called one of my specialists a hardass and it was so clearly a compliment. It was… and the specialist was worthy of both the compliment and title.

Dana Farber responded again: @linuxlibrarian Of course, that’s not how we describe it in the literature….

They totally should, incidentally. I mean, at this point, all bets are off. I don’t want to hear about rare disorders and groundbreaking research. I want to know if a doctor can roll with weird shit.

Eddie apparently can (as I was told by another weird shit loving dorktor). I know my problem isn’t based in my brain, or lungs or heart or… But it is somewhere. It doesn’t even seem immune based so much as my immune system is being a turd thanks to whatever it is… My blood work is very normal for a sick person. My blood work is way too damned normal for a well person, in truth. The odd tests that come back are always the same, but never so out of whack that it screams much beyond iron supplements, or maybe you have an infection…

Well, okay, except for my electrolytes. Still.

Also, because I needed to make us promise we will go somewhere fun when this is over, I got a new camera. It’s sweet. Check it out:

Ivy

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Welly McWellpants

It’s probably not a real surprise to hear that when I write anything — anything — I absolutely hate coming up with a headline or title. Probably my favorite title for a piece was a line I lifted from Sojourner Truth, and I’m not sure that necessarily counts. So… sue me. No, really, don’t. You’ll come out owing.

Now. Eddie, the local neuro, was supposed to call last week. I mean, we called and he told his office admins that he’d call by the end of the week. He said this Thursday. I also understand that in my case, when I say “by the end of the week” I actually think it’s Wednesday, regardless of what day it truly is. I am pretty sure I am not alone in this case.

I suspect this means that MGH sent more than a ream of paper via fax suggesting, over and over, that we all go get bent. I don’t know, maybe Eddie is a slow reader, maybe there are things he’s trying to line up, maybe he just never got around to it. I don’t know. That’s the pisser. If he’d called, I’d at least know that.

I am trying to track him down today, with the idea that I need to know at the very least the basic wavelengths we’re on… I suspect the strongest suspect is still a form of histiocytosis, but I believe the MGH folks when they said they were going to sit and mull it over and pinpoint as best they could any other likely suspects. It will save time in the long run. I know it takes time, I know that they are trying as well, and I know that none of that is unreasonable — except that it’s all completely unreasonable to live with.

It’s funny because things just keep rolling in and out as they have always done, just worse and worse and worse and it’s odd because there are things now that are obviously very connected to the situation that started years ago and I never really noticed. Mostly the skin stuff, and the runny nose (that isn’t sinusy. It’s hard to explain) and ears that feel like they are leaking battery acid, but are never infected.

There are things that are just rough getting used to… Really, I tend to like weight on me… well, more than I have. I know it doesn’t look horrible, but for the mutant lymph nodes. But it doesn’t look good either. And it doesn’t look like me. And it’s weird as hell to know that I have both an upper and lower line in pant size that I don’t want to cross. I am crossing the lower end. It pisses me off, because I’ll buy pants and wear them a few times and then, at least at this size, hopefully never again… But crap, I wanna spend money on fun stuff. Sorry. Pants aren’t fun. Pants are just pants — whatever the hell kids mean when they say something is pants.

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Update on Updates

For those breathlessly awaiting an update… I had a kernel and libc patch applied to the Ubuntu install on my laptop — usually a kernel update and without fail a libc update would completely FUBAR my laptop and often meant it was easier to reinstall Ubuntu. Eight months ago I suspected it was my hard drive going. Now, I have a new hard drive in the laptop and the update was flawless.

Wait, that wasn’t what you were waiting for?

A gentle reminder to friends, family, Romans, and whatnot: I am alas not the only sick person they see at hospitals, and with what all they think is going on, they’re actually taking pediatric oncologists with a specialization in a disorder that’s… the medical equivalent of a duckbilled platypus… away from little kids with brain tumors or pancreatic tumors or adrenal tumors and you know that means they’re taking it seriously, but you also know that means an instant answer on anything is a sign no one is thinking about it in a real way.

I do know the report from MGH made it to my local neuro Friday. I haven’t a clue what was in it, of course, and I guess there was measurable consternation at the time it hogged on the office fax. Then, maybe I’m wrong, because fax breed consternation as a rule anyway. I will probably know something more about where from here this week.

I hope so, just because… this is not cool. We’ll leave it at that.

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Breaking News

There’s a huge cicada on our porch. Hey, I thought I heard them outside, I just didn’t think they came this far north. Evidently they do on rare occasions. Of course, I sort of am repelled by it, feel bad for it, and want to feed it to the turtles.

There you have it. Busted.

More thought on my visit Wednesday and I know that it really was probably about as good going as it could be. We pretty definitively ruled out most other causes, and without any more nasty testing. I live in fear of a lumbar puncture. I mean, not the actual procedure, the day or two thereafter when life is just a big headache (literally) and ambient high suck levels suck higher. If this doctor had any real suspicion it were infectious or viral at all, he’d have done it. And he’d know if there were any chance at all.

Naturally, I haven’t heard from anyone yet. I know my local neuro guy is on vacation till Monday, and I think that he and the MGH doctor will probably talk either to Dana Farber’s people as a team or Dana Farber will be directed toward my GP and local neuro with the knowledge differentials were eliminated elsewhere. On the one hand, it feels like no body feels like this is urgent but you know, me and you and stuff, and on the other hand… doctors don’t outwardly panic and rush things unless you’re bleeding out or spontaneously combusting. I know that they are going as fast as possible, and I appreciate more that the neuro at MGH said he was taking a moment to think about who should see me and how it should be handled because at this point, extraneous visits aren’t doing more than confusing the issue and wasting everyone’s time. The trick is getting to a checkmate in treating and diagnosing in as few moves as possible. Chess timer on.

I know I was taken seriously, and man, it was weird. There were a lot of sick people there. I mean, maybe not at first glance, but then you’d really see the person in the waiting room and think, “Crap, that sucks.” Of course, it sucked to go into the ladies room with its harsh lighting and three quarter length mirror and see myself and think, “Crap… that sucks….”

It blows that it takes that to get er done, but then, there was really no way to know this was the direction we were heading earlier. I can still be mad with the dismissive dorks though.

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