Look at the Birdie!

Sometimes I feel obliged to say something.  Like, right now, for instance. I am just waiting till tomorrow when maybe I’ll know something more about what they punched out of my muscles, and whether it explains anything. some things, or nothing at all. Since there’s really not a best or worst case scenario, what’s been the crappy part is just waiting And the lack of phone calls from the doctor means nothing, incidentally.  He was very clear on the fact he isn’t calling with news either way, and I wouldn’t be able to drag it out of them (truthfully, I’d like to call today and ask if the results are back in detail enough so that I know whether I’ll just be going in for naught…But at this point, I’m pretty sure any preliminary/intermediate testing is done enough that if reflexive longer testing is needed, I’ll at least know that much). And while it does matter, at least I’ll know why it matters.

At any rate, I did get a call Thursday late afternoon returning the voice mail I left at my GP’s office about whether I needed another referral for this next orthopedic oncologist’s appointment (the one tomorrow, yes). The interesting thing is I haven’t called since the middle of September, and I haven’t left a message since they moved to the new office… Of course, I couldn’t get a word in edgewise as I was told what I knew anyway (which is I have six visits off one referral) and I was kinda just thinking… “But I never left a voice mail, dammit.”  So no idea who at the Brigham called them or whether or not they ever really got the information. Hooray!

So in the meantime, look at the birdie. It’s easier this way.

Cardinal

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Rowr. Or Not.

Just to clarify, if you all want to send me an email or such, I will answer and all that… And I’ll probably send some to people here and there anyhoo. It’s just that there’s stuff lots of people might want to be updated on in my world that’s better off with a “blanket distribution” approach, because I really can’t do more than an email or so a day.

This is also about all you’re getting out of me today, because that’s sort of all I can manage. Case in point, I didn’t log in here to just make the above statement… but damned if I remember what the hell I logged in here to do primarily. I hate it when that happens. At any rate, don’t feel like I don’t want to hear from anyone personally via email. Just know that even though my response might seem as though it came from a developmentally delayed fiddler crab walking across my keyboard, it a) didn’t and b) is appreciated and welcomed.

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TFM — Please R It

So maybe today’s request to RTFM is about as technical as it’s all been recently around here, but it’s valid. I think it’s less that people fail to read the manuals (or email) I send them, but by and large, I don’t know because most of the time I don’t hear back. I mean, much of the time I don’t expect to,  but then all of a sudden there will be an email from someone asking how things are going and I’m thinking… I don’t know, how closely were you following when I wrote you a while back? Mainly cause I don’t expect people to answer everything, people have lives and all, but the effort it takes to write a single email means a lot of other shit doesn’t get done, and if I’m throwing a lot of notes into the void, I’d rather it be a big void in the hopes that a few people read it and can opt to respond straightaway or save till later.

And I know what people’s inboxes look like, so I know “saving until I get a chance to respond in a meaningful way” never really works out, and truthfully, hell, internet, there are no secrets here. So if you just get an email from me in the future here and there that links to a post here, it ain’t personal… But my problem is not the normal lack of time, nor is it the lack of something to say. It’s that I don’t have the energy to say it coherently, especially if I have no idea if what I’m saying gets to the desired inbox to start with. I mean, Mr. Shoe has letters and pictures in his gmail inbox of some kid playing a tuba in a junior high marching band. We have no friggin’ idea who this kid is, who this proud parent is trying to really reach, and if this parent is really proud, why they insist on making this poor little boy walk around his middle school wearing a feathered fez and toting a tuba and then send the evidence to total strangers.

So look, it ain’t personal… Or even impersonal… It’s more like an economic thing for me. If you haven’t written, I don’t think you’re an ass or a bad person (because I know I will get some people writing that they’re such a bad friend or family member or Nigerian spammer… um, so do you want me to disagree or agree or what? I mean, life goes on. I get it. If you are doing it intentionally, I would like to know, but I really doubt that anyone is. It’s hard, I get it. Really.)  And incidentally, no, I am not ever joining Facebook. And believe me, Facebook lets me know every two days or so who all since the Mesozoic era has sent me friend requests, as well as those who have not made the request, but shared their contacts like a bunch of boobs so that Facebook knows that I know them. The only other place that spams the living crap out of me like that is FTD, but at least it’s because I bought friggin’ flowers from them a few times.

There are other reasons I won’t join Facebook (and why I am on Twitter and Indenti.ca). First, I can get into less trouble with the 140 character limit. If I spout off something in a moment of annoyance it’s only a 140 character bitchfest. Therefore, people tend to get less alarmed. Now, if I write a post here, it generally takes some good healthy effort and thought. I may not be thinking clearly, but I am more likely to put in the time to try to at least be accurate in conveying the overall point and emotion. Facebook is a dangerous mix for me — it’s easier to update on the go, it’s got more of a chance than a 140 character transmission to be alarming and totally fug up the message I’m trying to get across. Since I have many friends and family members who I know are world class worriers, and since my situation is worrisome and I’m prone to hyperbole and really unfortunate typos if I’m buzzing along not thinking so clearly… I stay away to avert disaster.

Also, I don’t like to grow carrots and rhubarb and stuff in real life, why the hell would I do it online? Why the hell do I want to hear about it if you do?

So anyway, most updates in my situation are just going up here now. I know that I shouldn’t tell the whole damn world everything, but I can password protect posts too… Although at this point, I really don’t care that much. I also know this point isn’t always going to be right here. But I also have learned that laying it all out on the table beforehand, for me, tends to minimize the chances of any unpleasant surprises or disappointments further down the line.

For those friends and family that are super nice, but not very techno-savvy (and some of you will get that reference. One or two of you. Maybe.) there’s easy ways of following along. I mean, bookmarks are lovely. But Firefox and Chrome (oh, what the hell am I thinking, super nice, not techno-savvy… using IE, aren’t you?) can follow in the browser aggregator. If you click on the little orange dot with two lines up in your address bar, it’ll add updates to a feed reader, and you can see them all in one place without coming here.  And yeah, some of the rest of are laughing. S’awright, I laugh with and at you all equally on a regular basis. Ha ha ha. See?

Or, if I want you to know something in particular a little straighter away, I’ll probably send the link via email. Or tweet it. Probably email though, if you’re someone I email anyway. Twitter’s an awful lot like standing in a crowded room and every one screams simultaneously. That’s fun and all, but sometimes it’s hard to hear for hours after you leave.

This way, I know if I’m writing something (and this is a monumental effort right now) at least it will reach everyone I really want it to, as well as those I don’t know well but I know care, and no one gets left out or can’t go back and keep up. Better yet, I don’t sink energy into something that never hits the intended target, but gets blown out to the far reaches of the internet by a fez wearing tuba player.

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I Can Think Without Using My Butt!

…Just not particularly well!

Okay, a few things, before you ask: No. I do not know anything. I will not know anything until at least Wednesday of this week, but it probably honest to god will be more like Monday or Tuesday. And as much as this sucks, I am pretty damn sure they will not find anything that requires I see them before the scheduled appointment on October 13th. In fact, I have an odd feeling they might not have all the stuff they need by then. There are a few things they are looking at in the slides made from my 27 ass cheek samples (actually, I think they grabbed some from my leg and back too…) There is a reason… a reason that it was honest to god surprise on the nurse’s face when the other nurse (who I have affectionately named Nanny Ogg… if you know what I mean, you kick ass and you know that I was in good hands) related the number of samples taken. They took more tissue than one normally sees done when they suspect carcinomas or whatever. There is also a reason (beyond the number of slides they have to look at, but I bet it plays a role) that they told me it would take seven days at least for anything to come back, but most other people going through there would know in three to five days.

That’s all fine and dandy. If I had it to do over, I’d still refuse the conscious sedation. I think the one period of crappiness that I had during the procedure was due to the contrast that they used to better visualize the mass. I have had tons of CT contrast in my life and it is not generally a problem. I am not allergic to it, I don’t take any insulin or pills to treat insulin resistance… But damn, it seemed like the initial hot flash/metal taste/holy crud I peed myself feeling lasted a long time. Then about half way through the procedure came that nasty feeling of nausea and feeling all hot and sweaty and like I would pass out if I was standing up, instead of lying there having them poke a giant guided needle through three muscle groups… I have a funny feeling my blood sugar might have bottomed (heh!) out on me and then evened off on its own. I am wondering if that was courtesy of no food and a huge dose of contrast.

At any rate, it wasn’t that bad, and it beat feeling hung over. And I was sort of surprised that things were pretty well behaved the next day. It definitely hurt, but it wasn’t as bad as I would have thought.  It bled for about two days (not horribly, but enough so that I laid off the naproxen for a little longer) and has been pretty nicely behaved.

I mean, I feel like crud, but at least the little biopsy site is okay. I am just getting that lovely feeling that the hardest part about finding out (or not) what is going on will be dealing with other people’s reactions. And I know that knowing won’t stop theories on why this shit happens, even though chances are good no one knows why and even if we did, it wouldn’t really change much now, would it?

But the deal is the ten day workup is normal when they are sure that what is going on isn’t your run of the mill sort of situation (I am still pretty sure it was less the size of the mass and more the depth of it that was a concern to the doctors… It wasn’t insignificant size-wise, but if it had been in a dermal/fat layer or maybe even in the gluteus maximus (heh!) it would have been a little easier to dismiss with a “we’ll just watch it” call). I know that they tend to want to look at stuff deeper in because removing a 10 cm mass once your leg has all atrophied and stuff is something everyone wants to avoid… and often enough, that’s how it plays out. I mean, it wasn’t a bad recovery with a little .20 something gauge needle, but you start cutting extraneous tissue and taking out through incisions… man, I would not be walking around right now, since essentially it was stuck in the hip abductor muscle area.

So the long and the short, no, no updates. I am tired, and I feel yucky, but my left ass cheek is still running circles around me.

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Dumb, or Obstinate?

Quickie one for anyone who hasn’t heard the latest: My left ass cheek has a new hole. Actually, it’s more my hip, low. And it’s a small hole. And it doesn’t hurt. But if you can tear your inner glutes, this is what it must feel like.

Not bad… done with lidocaine. I had the option of the conscious sedation, which is that stuff that I imagine helps a bit with tensing muscles, but not so with pain longer term – and it is great with longer term dopiness. I hate dopiness. I am already a dope. So I refused it. I signed the consent sheet, but told them I would rather not.

Okay, an hour and a half and twenty seven (yes, twenty fricking seven) samples (core, fine needle, smears, etc.) later, I still refused it. Truth is, it was gonna be uncomfortable no matter what. No sedation means faster trip through recovery room, and less hangover. That means a lot of awesome for some misery when I would have been miseried up anyway.

I also think the nurses are wondering whether I have steel ovaries or am just plain pig headed, because I am not sure they see people do that so often and actually succeed. I was officially called a “hall of famer” and “one of THEM” by the same nurse. 

So we let pathology play with twenty seven cheek samples for a bit. Have fun dudes.

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Hilarity to Ensue Shortly

So fortunately for some most likely innocent souls at the Brigham, scheduling called to set me up with the biopsy yesterday morning. Yeah, I mean, I think the point of contention was starting to be that while I didn’t fully expect that the actual biopsy would happen within the week timeline the orthopedic doctor gave, I did think it would have been well and truly scheduled. And for some reason, the fact that that took so long to get done (and probably had little impact on the date itself) really is what irks me.

So anyway, next Wednesday, early, I get a good poke. It’s a quickie thing, and I was offered later times on Thursday if I wanted. Heh, no. What was even funnier was that the lady scheduling (who seemed like a nice enough broad) said, “I don’t blame you. That means you get to be the first appointment of the day, so they won’t be running late yet.” Yeah. My god, I know. At least they do as well. But like I said… emergency surgeries and procedures not going to plan and such are things that you have to be happy if they are only causing a delay for you as opposed to being performed on you.

Meanwhile, back at the ranch. Two family members with different malignancies are doing reasonably well. I think the lesson here is that diabetes (of the insulin types, not the more confusing, but less nasty to live with “diabetes in nothing but name” type I have) is an enormously shitty thing all on its own, but it makes other shitty problems take on a fresh, new shitty sheen.  As Mr. Shoe said, it’s like the BASF advertisements. “Diabetes doesn’t cause the cancer, but it makes the cancer shittier!”  At any rate, at least it’s familiar enough territory that doctors and nurses know to check and how to keep a handle on complications like that.

The other family member seems to be responding pretty damn well, from what I hear, to the massively crap leukemia chemo regimen and that’s a really good sign.

And Norman, our very elderly tibetan spaniel, is still kicking. At least, I can hear his stomach gurgling. If he had been a girl dog, we could have named him GERDtrude. Holy reflux, Batman.

Of course, the inevitable question I get is where from here… You know, once they poke my ass cheek. That depends on what they find there, of course. Let’s put it this way: overall, this is something, it’s pretty clear, that’s a nasty, evil, sonofabitch. It quite likely could shorten my lifespan, and of way more concern is the fact that it’s basically taken my quality of life and disemboweled it in the messiest way possible while still managing to appear innocent. As time passes, though, it’s obvious it is not so benign, and is progressive — though apparently it’s a low speed sort of progressive. There are things that cause greater generalized flu-like symptoms (like I have had), and many of the quirkier less flu like symptoms I have that they need to look at. These are things (like histiocytosis, other -cytosis bearing diagnoses, and various and sundry overlap/crossover/mashup immune dysfunctions with or without related malignancies) that keep bloodwork looking tame until these fires start popping up. And the fun part is that even though biopsies are pretty much the only ways to find this stuff, sometimes they don’t turn it up right away. Or consistently. Like I have mentioned, thymuses are awesome in that way — a thymic carcinoma is bad friggin’ news, but finding an overgrowth of cells (be it a thymoma or hyperplasia that isn’t chemotherapy induced) doesn’t rule out that there isn’t some cancer elsewhere. It definitely implies that there’s some immune screw up.

Good news is it seems we have zeroed in on a system. Sort of. Bad news is that we could be chasing this dragon for a long time before it’s clearly identified.  Good news is many things are treated similarly, but with varying intensities. In as much as I don’t want to deal with the variable intensity management I might be looking at, I also am a little nervous they might just find not much and go solely with prednisone or a like steroid. Don’t misunderstand — I feel better on the stuff. I feel boatloads better.  I know though, last time, I didn’t feel as better as I really should have. On the one hand, I could give two figs about the long term risks and I am aware we can minimize them, I want to feel better now, dammit. On the other hand, I know it doesn’t stop the process from happening. It might slow it a bit, and that might screw me over in the longer term. I also know I won’t feel better enough, though, that I won’t hit that tipping point fairly quickly where the side effects blur with the disease process and we wonder if it’s worth it. And I know feeling better tends to breed complacency on the part of the patient and the physician.

In a nutshell, I wish this wasn’t going to suck as much as it is probably going to… but if it has to suck, I think I’d prefer as many suck cards be on the table now so that any suck that comes later will be easier to identify and deal with. C’mon, is that too much to ask? (Feel free to bite your lips, folks).

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It's Not Fax Machine Surgery, Y'Know

Honest to pete. We called to check how things were going on Friday with the whole scheduling the ass cheek biopsy process… Let’s put it this way, the phlebotomist couldn’t find the doctor’s code in the database. Probably not as shocking as it would seem, as a) it’s an Oracle database (look, I’ve been there, done that, and you can certainly tell) and b) the Brigham is a teaching hospital… and even attending physicians take time to move through the ranks and get solidified into the database. My orthopedic doctor is an actual full time attending doctor/faculty member, but he’s a new one. So it wasn’t surprising that she couldn’t find him, and I was happy when she stopped trying to change his name and said, “I’m going to screw this up if I keep looking now, I’ll get it matched when I have a free minute.”

Then I wondered if she had a free moment ever… You know, you just wonder. On Friday, I learned that she had indeed gone back and found his codes, but an emergency surgery kept the doctor from doing much Thursday and into Friday. I should hear by Monday afternoon. Okay, fine. Stuff happens.

Except I didn’t hear, and when we called on Monday afternoon we learned that there’s a paperwork pile up and they’re not sure if the request has made it to scheduling yet. O-kay. And so I restart taking naproxen. It doesn’t do a whole lot, but it does more than Tylenol. And they said that they’ll tell me when to stop before they do the biopsy… which damned if we know when that is. I get pissy because this shouldn’t be the hard part. I get that emergencies pop up. I mean, I’m glad it’s not my emergency surgery. You can’t foresee that stuff, whether you are a patient or a doctor. But, um, as a doctor you can count on paperwork and the fact that someone will require an emergency surgery (most likely at the same point you are getting mired down in the paperwork). And you’re a doctor.

I know hospital administrators and insurance companies don’t make it easier, but dammit all, paperwork is not hard. It’s not fun or rewarding. and we all hate all-in-one office devices. But it’s part of the job too, and I can tell you this much: there are definitely hospital networks that deal with this more effectively than others. How paperwork is handled doesn’t directly relate with how skilled a group of physicians are — except that it adds so much frustration to the situation that it makes me wish that DFCI wasn’t affiliated with the Brigham at the moment.

What I wouldn’t give to be able to go to work and face piles of incoming paperwork. I’m just frickin’ sayin’.

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Quickest Run Down. Evar.

All I can say is that it’s amazing how little pain killers do without the help of anti-inflammatories… I can only take Tylenol until they biopsy my ass cheek, and Tylenol sucks. It sucks with the narcotics that tag team with it sometimes, it sucks without it… it just plain sucks. And it kind of sucks more because the biopsy (which sounds like a straight forward needle deal, which is a huge relief) has not been scheduled. The orthopedic guy said it should be before Wednesday, so I should stop taking naproxen. But if it isn’t scheduled by day’s end, um… I think stopping Sunday might be just fine and spare me some agony.

Of course, it isn’t my ass cheek that hurts… or my joints or anything, really. It’s my damned ears/eyes/face. The ass cheek… right.

It apparently is somewhere between 2-3 cms in size. I get the impression the size was borderline for “let’s just watch and see what happens” (I think once it hits the 4-5 cm range they don’t question at all).  I also get the impression that given my history, how I looked in his office (it was noon thirty before he came in, and courtesy of not having a rest, a Ritalin, or a drink of any variety, my face was fire engine red. My legs were purple, and my knees were mustard yellow. Yeah, I am puzzled by that one too, but it’s been like that for a couple years), and the fact that he could move my leg every which way and I didn’t feel anything unusual, and then he pressed on it and I did feel something unusual — a biopsy was in order.

It was kind of funny. I mean, you press into my hip joints on any given day and they hurt. I mean, the damn things routinely semi-dislocate anyway. So he did that, and yeah, it hurt. And then he started squishing around on my lower back and it was like… oh, hey, that’s okay, and then a little lower and I was like, “Huh…yeah. I do feel that. It doesn’t hurt a boatload, but it probably shouldn’t feel like much of anything.”

He also wanted to know when I was diagnosed. I said I’d let him know when it happened. Heh. That is a slightly uneasy feeling, as he had kind of assumed I was a veteran of Dana Farber and like institutions. At any rate, we don’t know what we’re going to see here, or if it’s anything at all beyond “hey look, another group of cells hanging out and aggravating tissue they shouldn’t be anywhere near… but they’re mostly good cells that just got misguided.”  At this point, it almost doesn’t matter. I mean, it does… If there’s something that suggests malignancy (I mean, more directly than the fact that normal looking cells accumulating in your lungs and thymus and pituitary is something to keep a good close eye on) it would very much change the approach. In terms of outcome, I’m not sure much changes. This is going to be a game of whack a mole from here on out, I am afraid. And malignant or not, it isn’t really a great situation. In some ways, I wonder if a history of malignancy wouldn’t motivate more proactive care on the part of some doctors.

Guess what I’m saying is a variant of my old standby: Lots of things can kill you that aren’t cancer. Lots of things can be horribly debilitating that aren’t cancer. And cancers can be horribly debilitating, long term, and not necessarily kill you.  Not much I can do about what it actually finally is (and when it is finally determined — I expect the next growth they spot will STILL be cause for more debating)… but as much as it sucks to have things discovered, the more we know means the better we are able to deal with it.

When the biopsy is finally scheduled (he said it should be by mid-week that it is over and done. I don’t know) it’ll be another week to ten days and we’ll see what they say. Mr. Shoe and I suspect they might find Penny the pug up there. I mean, where ever I go, there she is.

Mama!

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The Projected Trajectory Says It Should — INCOMING!

Hey, sorry, folks, it’s just been one of those months. Everyone has them… when hiding under the bed would seem like it isn’t a bad idea, except that you know that if you did, under bed monsters would pop into existence.

Mostly it isn’t about me, except that it is. My cousin, her husband, Mr. Shoe and I got to hang in the waiting room at Dana Farber… In my case, to learn that I had yet another whatever the hell it is somewhere where I really didn’t think you could get those sorts of deals (and… well, I know at this point to expect the unexpected, and while I don’t expect one of the most likely explanations — I never did — it means one thing for certain: whether it makes sense or not in the grand scheme of things, it’s going to be a literal and figurative pain in my ass.) In my cousin’s husband’s case,  it was to get that second pair of eyes to verify the first doctor’s take on his lymphoma.  During that waiting room hoedown, we got the contact information for my other cousin’s adult son, who just had the “hey, know how you had bleeding gums? It’s leukemia” bomb dropped on him. We all live in Massachusetts. He’s in California. If there isn’t an easy fix for health issues of this magnitude, it sure as hell makes you wish we had teleportation technology just to ease some of the sting.

I am going to see the orthopedic surgeon on Wednesday so he can poke at my ass cheek.  I mean, I don’t what else to say. I kinda have no clue exactly where this little bastard is (the tumor thing, not the surgeon. He’s at the Brigham with several other bastards. Ha!)  or how they would go in for it. I mean, it’s not on the big ass-ass muscle, it’s between the smaller two… and it’s large enough I would say they wouldn’t want to leave it in, and if it looks tumor like as opposed to cyst or fatty like (which apparently it did, since I’m headed to see him) I would guess they’d want more than a needle biopsy. If it wasn’t doing much more than sitting in there and they knew it was just a bunch of cells or fibrotic tissue, I would imagine they’d be able to just give a needle punch… but we don’t know that. And apparently it could be any number of things, very few of which show on other tests (and alas, it is possible it will be histologically different than my thymus, from what I can tell…  Thymuses are great for reflecting an immune/lymphatic system having a chronic attack of neonatal bovines, but generally don’t announce whether they’re Angus or Hereford. They don’t need to, usually.

Anyway, no idea how they’ll be getting at what they’ll be looking at, and they could see just about anything.

I think the location sums up the whole of it pretty damn well, though.

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I Like BIIIIIIG…

Butts… and I can not lie.

This is going to be short, because what I know about me isn’t a whole lot more, and the other stuff which isn’t me directly is just all “awwwww” inspiring in a not terribly awesome way (it can always be worse, of course)…

What I do know, after tests Friday and seeing my Dana Farber guy today is that it must be so incredibly hard to tell a patient with a straight face that they have a tumor in what would be superficially (if it weren’t way down under muscle) the left ass cheek. Told ya the abdominal and pelvic CT would be weird. I didn’t see that one coming. Right up from behind, as it were.

It’s a fairly beefy little bastard too… I don’t know. I mean, I don’t know of too many other left ass cheek nodules to compare it to — it is sitting between I think he said the gluteus minimus and medius.  Could be any number of things, all kind of weird. I don’t really hurt there like they sometimes see (sciatica)…

So, uh… I am going to have an orthopedist I guess poke my ass cheek and then I return to see what we see. We of course need to hold off for a couple reasons starting anything that might suppress inflammation or my immune system till then, and I know he is serious about management and the need for it even more, as the re-check schedule on the brain MRI was changed to twice a year. I think he didn’t expect to see much of anything — and probably not that.

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