Wheels on Fire…

It seems whenever I sit myself down to actually do something more than one of these little posties here, something bursts into flame elsewhere on my computer. Usually, it’s my browser, and usually, I have saved along the way. Sometimes, though, I end up going through a progressively more frequent set of exploding browsers (Firefox, Chrome, you name it) that I say the hell with it and decide to come back to things. In case you’re wondering, I’m pretty damn convinced it has something to do with the 64 bit browsers using the 32 bit libraries.

The other thing that tends to gum me up is that I know I should be putting together questions I need to ask at the next doctor’s visit, because I do have some. I mean, I also know that by and large many of the answers are going to be along the lines of we’ll see as we go. I have questions about the stuff I never really brought up before because… well, hell, there’s so much crqp I never brought up because there’s only so much time and so much idiocy you want to face in a doctor’s visit. I know that I have two or three other issues that are probably far more important long term, but damn, I’d love to know if there’s anything I can do about the fact I seem to be oozing toothpaste from my neck, scalp, ears and eyes.  Mostly it’s just gross (although it does hurt around the ears and eyes and jaw). Fortunately, it doesn’t seem like it is from inside my ears (actually, it most definitely isn’t. It just makes them feel referred irritating nerve thingies). Total insult to injury thing though. I mean, ewwww.

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The Best Laid Plans…

I’ve been trying to get some stuff up here, but alas, it seems like I either have some massive technical issues pop up, or my attention gets lured away. I also wish I could say I felt better in any real significant way, but beyond the initial stuff that prednisone does (mainly, wake you up some) there’s… not much. I seem to have trouble actually eating (I know, I know. I don’t understand either) and the other stuff going on is the stuff that is just me, I know, and not a result of anything I’m currently taking. I’m surprised and sort of thankful for the prilosec stuff, though. I think I was having larger issues there previously than I had realized. Go figure.

We’re working at it, but I had strongly suspected long before this point that prednisone would help, but not be a real long term solution. Or even a particularly good singular patch up… So we’ll see what happens in a couple weeks.

Meanwhile, I’m lifting weights. See?

Me and my cylindrical daughter

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with | 1 Comment

In the Meantime

The Essence of the Glottis

Even though we’re not hosting anything for the holidays and any reprieve from anything lately has been spent catching up on all that stuff I should have done three years ago, it’s always good to remember to temper the “have tos” with some fun stuff.

So Mr. Shoe and I opened presents on Wednesday. Oh, can it. We’re grown ups. And it was fun. Mr. Shoe was sweet and got me a nifty Tamron 60mm macro lens, which ensured I had to make sure both “have tos” and fun stuff got done.

Penny is unimpressed. She also has a very lovely glottis.

Re-working the site further will probably be something that happens later next week, but the behind the scenes juggling both online and in real life is almost where I’d want in terms of “absolutely has to get done.” That’s good, because if I waited on some stuff I was sort of afraid I’d be screwing up other people’s workflow.

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Divergent Journeys

…actually, there’s a Barenaked Ladies song that refers to divergent journeys, that we may meet again in hell. Naturally, this isn’t what I mean, but it’s one of those things that sticks in your head.

Prior to getting the LCH diagnosis (Jeez Louise, that was just last week?) our lives were in suspended animation. It was impossible to plan five minutes ahead, never mind five days or weeks or months. Of course, the pisser is with the diagnosis, especially right now, at the very beginning, when we know very little about how I’ll respond or what exactly that will entail, is that it is still really impossible to make any detailed plans, even though we really want to.

It’s an odd position. We know what you have, except science as a whole isn’t too sure exactly what the hell it is. We know that is, what it acts like and what it doesn’t and that specific information makes it a real idget to classify.  Certain treatments work somewhat consistently in diverse populations, but then there’s that other population that just didn’t get that memo.

It’s not bad news, of course. It’s just that a certain amount of uncertainty is going to be the rule rather than the exception even after things are ironed out more. But it’s really hard now because dammit all, we all want to get to the good part.

The other complicating factor is that this just doesn’t happen a whole hell of a lot. Look, I know I am not alone, and I love you all dearly, but we all do this sort of stuff alone, simply because nobody can stand in someone else’s shoes. Empathize, sure. Relate to, sure. Understand at a deeper than superficial level, of course. But this is a weird place and while LCH in adults is much like that in children, children don’t tend to… um, write about it nor can they explain it. Their parents have a very different take — and god help them, I can’t imagine having to watch a two or three or five year old go through this. It’s no less hellish, and in some ways, probably moreso for a parent to watch. Trust me, some days I feel a lot worse for what Mr. Shoe has to see than what I actually have gone through.

And LCH in adults looks like a lot of other things (hence the really exceptionally long time for diagnosis, even when things got really freaky). It looks like an autoimmune disease, or an immune deficiency, or cancer. Or like you’re a screaming, flaming, anxiety ridden pain in the ass. The doctors who work with it most can’t quite determine what it is (except that patients with it have at least a little bit of a right to be a pain in the ass and probably need a good primal scream now and again).

So I don’t know what other people with LCH have gone through, so much, except that many people now are essentially works in progress. I have re-invented and revised myself before, and I can do it again, and I think it will be easier once I see what this first round of attack is like. It may not always be this way, because even if I don’t change, medical classification and advances do. I have a much better idea of what I am dealing with, and thank-friggin-goodness I know that I am dealing with something. (I always have to laugh at the “you know how you feel!” people. No, I got to the point I really didn’t. Something was wrong, something had changed, something was fundamentally so askew that I felt like a person in a vegetative state, except they get more help with daily living — and no one could say that anything beyond I seemed in relatively good health. How could I not feel like it must be me, like I was doing this somehow?)

But truthfully, I am not sure what the next year is going to bring. I’d love to be able to work at the Historical Society, and write again at the usual haunts. Hell, I’d love to do more. For now, though, I think I’m going to set a specific little bit up on this site talking about what’s going on in terms of managing this, and where I’ve come from. I’ll try to do more generalized stuff too, in this main section.

Part of it is for my memory, which still kind of sucks. I also know that while there is that singular journey we take, it’s nice to know that there are others who are travelling parallel paths. Part of it is when you’re sick, there’s stuff no one wants you to say, no one wants to hear you say, and stuff people feel obligated to say to you even though they know it’s a line of bull.

It’s okay. And I’m going to say it. And in the process, we’ll find our roads, and where ever we go… There we are. There’s some comfort there, folks. Know what? Just go back to the egg nog. Seriously.

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A Real Update, Sort of

We’re now pushing a week with the prednisone/prilosec plan of attack. I just started the antibiotic last night. Evidently there’s a sulfa drug that is used more often for this sort of thing… but it strikes me as exceptionally odd as I know a million people with sulfa allergies (no, seriously, a friggin’ million!) and I imagine that there have to be people on chemo or with HIV or whatever who actually also have sulfa allergies.

Anyway, the pharmacy had a wicked time finding this antibiotic, and truthfully, I was getting a little uneasy about the whole thing. The idea is to ward off this particular pneumonia that likes compromised immune systems. I guess it is a fungal based pneumonia. I haven’t a clue, and I imagine it still is fairly unusual, but… dudes, you have not seen our shower tiles up close and personal. I harbored some fears, that’s all I’m saying.

Anyway, got the antibiotic last night. The package insert was quite fascinating. I think it was because it’s the usual sort of “if your start bleeding out every orifice, call your doctor immediately” stuff… and every last side effect was tempered with the phrase “unless this is directly relational to reactionary leprosy.” This stuff is used to treat leprosy, as well — I am assuming humans get a different dose than armadillos.

I can say this: I suck. I mean, this is better than it was. I just realize now that I suck, I did suck, and how much I was sucking and didn’t realize. I am taking 60 mg of prednisone, and the good news is the cortisol effect was immediate. Hooray stress hormones — and I mean that. I still have to take both forms of stimulants, but I am able to take one or two fewer Ritalin PRN since starting the prednisone, and the awake factor feels a lot more natural.

I am also all too aware of how shitty I feel. I mean, I wasn’t. I couldn’t be. I wasn’t alert enough to waste the energy having it register. And there’s the annoying shitty… my skin is just disgusting. I swell up at odd intervals (usually neck, cheeks, and calves. Damn my calves!) and of course my feet… but I think that’s not quite the same process. There’s the regular old joint pains that are quite ignorable.

Then there’s the stuff that is worrisome, I guess. This is the stuff that tends to get pushed out of the way still thanks to the constantly annoying aspects. Please note this has little to do with exercise or being in shape or whatever — I might be able to take a flight of stairs at a run with no issue. I might get winded and have my extremities and face turn purple trying to put a sock on, and then the cough. These things might happen within a half hour of each other. It’s just… I notice that I am not as able to do as many “flight of stairs” without some sort of repercussion. This isn’t new, I know it. I think I’m just finally seeing it instead of stuffing it down.

I think that at least the prednisone is making peeing easier (sorry, folks, I’m sharing. And I am the queen of starts and stops and starts and stops.) It’s not making me any more goofy than usual and I imagine that the food response will kick in, but right now, I kind of just feel like barfing all morning (I do eat with this stuff, of course, or I would be barfing) and by afternoon I can sort of eat, but for some reason, I randomly will find that whatever it is I’m chowing down is just really unfriendly. And it can be fine the next day, or later on, or whatever. It can be the blandest food in the world. So either because I feel barftastic, I can move a little bit more, or because (this is my actual bet) I can pee almost normally, I have lost a few pounds since starting it. While it makes me uneasy, it isn’t totally alarming, either.

I half suspect I might have some sort of adjunct therapy stuck on in January. I imagine that this may have been an act of kindness to get me through the holidays without my being a big friggin’ party pooper (and I appreciate this greatly, because it was getting very old to be the one that holds it all back). I think the response seen by that point and blood levels and such might affect how we proceed or if we just keep proceeding. I kind of thought by this point I’d actually have some reduction, however slight, in pain level or even my breathing issue (intermittent as it is) but not so much. That kinda sucks. It is still really early, I’ve been like this for a long time, and truthfully, combination treatments seem as though they are used more often… but it’s a weird time of year, I have a lot of crap to wrap my head around anyway at the moment, and maybe a stab at the beastie with a known quantity therapy for the first few weeks would be a wiser, gentler approach. Or at least give us some hints into how I might do.

I feel… different. I mean, it is better. I hate that disconnected, not able to think side of things. I also hate that I am realizing how limited I am physically thanks to the non-thinking factors, but they’re still easier to deal with. Give me a brain, I’ll entertain my little self all day long.

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Wait, Did You Get a New Sweater or Something?

Something looks different here, huh? Bear with me, I’m trying to switch some stuff around and hopefully re-vamp a few things here and there that might make life easier for everyone. Okay, mostly me.

But as you can see, things look kind of different and no small part of that is due to the fact that whenever something should be pretty straightforward, you do stupid things like lose passwords or import files all assbackwards and stuff. Or registrars just take their own damn sweet time updating nameservers (a few minutes? Right. Riiiight.)

Anyway, there will be some more changes and probably better organizational structure so that… maybe I’ll be better about this whole deal. For now, though, please wear your goggles and hardhat.

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How Deep is Your Stupid?

Mr. Shoe and I were sitting in the waiting area in the lower level of the Dana Farber main campus, and I turned to him and said, “As long as it wasn’t caused because I thought too hard about breathing…”

He answered, “Having a baby and cutting caffeine out will fix it. Duh.”

And I said, “You know, you just stop wanting to go to doctors because you don’t want to know how deep the damn stupid actually runs.”

The good news is, of course, the stupid stops here. Well, no, I kind of don’t believe that entirely, because sometimes there has to be someone not… I don’t want to imply doctors who aren’t involved at the moment are all Droolie McDummies… But let’s just say in the course of a normal life you can meet some contenders to the title, and life here has officially rounded the bend to a different sort of normal. A reason for past issues (a reason for a great number of past issues) and testing and pathology to back up that history has finally coughed up a big hairball of an answer. This is good.

I had a single moment where I damn near lost it… Of course, it was while we were making a follow up appointment. It was just the realization of how friggin’ weird and completely not obvious that was. Along with it came the realization that I was the patient of the three Dr. J met with during that late afternoon that got the good news — and he’s on the ball more than enough to recognize on many levels that it was weird and life changing news, but it was good enough news, and that we were okay with that — and he was still so damned upbeat with the other less than good news folks. (I mean, HIPPA be damned, you can’t be in a hallway in a hospital and see family members and doctors and people coming from hospice and stuff and not be splattered with the other patients’ drama. I am always glad when the drama elsewhere makes mine seem much, much smaller.) It takes a special kind of nerd to work with any weird case. I imagine that place is crawling with extra special nerds. Because man, I would probably implode. I don’t want to be responsible or actively involved in caring for anyone’s drama but those in my little circle. Doctors have big circles.

Today I started the prednisone, and the generic prilosec stuff. I am also supposed to take some antibiotic to stop me from contracting lung angel dust. I guess there’s a pneumonia associated with long time use of immunosuppressing drugs or you know… suppressed immune systems in general that’s called PCP. PCP stands for… p-angel dust pneumonia. Anyway, the pharmacy was out of the antibiotic, but I’m willing to bet two days stuck in the house without it won’t result my developing this.

I will see him in a month, presumably to see how things are going, and talk about what might come thereafter. First six months might be done with just a prednisone taper. If it goes well (or reasonably so, give or take a few months) there might be a time we see how things are without it. There might be an added something or other. It is a play it by ear sort of thing, and while the idea is that maybe this could knock back for a while, I get the impression it usually returns sooner or later. There’s also the added fun of my pituitary buddy, who might cause the “treat it” trigger to be pulled a bit more quickly than it would. Because if chemicals can avoid brain surgery, that’s just fine with me. Some cases resolve in adults and that’s it… but it appears as though that might be more of a pulmonary LCH thing. While I have a lung nodule, there’s not a real indication to believe it started there. Lung nodules are pretty much like pituitary friends.

The ass cheek thing? Yeah, that’s friggin’ weird. Not unheard of. (Warning: PDF containing details about someone else’s ass)

Anyway, prednisone started. You can not even swallow one (like, a real one, not the little puny ones that turn to dust in those damn packs they give you for allergies)  without realizing what a bunch of yuck it is. I swallowed three. They leave a chalky paste no matter how well they go down. And yeah, look, I know that probably is the beginning. If I’m lucky. Otherwise, I’m still sick. No worse feeling than losing weight while taking that stuff. It isn’t human.

But because cortisol kinda has an instant reaction, and the anti-inflammatory effects are not instant, I felt like my brain was much sharper today, even though I felt like crap. Actually, I think I hurt and felt ickier not because I really am any worse than I was yesterday, but I actually was not so plowed under my poor wored-out brain that I was aware of how I felt. I imagine that these things will even off in both directions soon enough.  I feel like I will be able to fall asleep tonight, anyway.

I will wrap my head around this one for real soon. I hope. Meanwhile, a pre-prednisone image. Expect more zits and possibly chipmunk cheeks soon. Incidently, I only look normal when I do stupid things on camera. Why is that?

I look natural this way

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About Face (Crash Crash Crash)

Forgive my shortness, but I need to share this. I know why I actually liked the idea of lymphoma. Why? Because sometimes it just kinda sucks to be a special little snowflake. Like, when it comes to health.

Guess who is light and fluffy and frosty good? Thas right… Thas right.

So do you know what looks like lymphoma, except when you look close under a microscope with stains and stuff? Langerhan’s cell histiocytosis. Yeah. It didn’t seem likely to start with because… well, even though the quirkies were really pretty LCH quirkilicious, even in a zoo full of odd animals there are some you see more than others.

Not everyone has a duck billed platypus. But sometimes, you go to castrate the zebra, and there’s the damned duck billed platypus.

Starting with a conservative steroid course, and seeing where that takes us. And no matter what it should do… there’s the watching. Because duck billed platypuses come, go, divide, conquer and sometimes evolve.

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Today is the Greatest Day I've Ever Known…

Okay, not exactly. Today is probably one of the weirder days I’ve ever known — and you know I’ve had some real zingers for comparison. Fortunately, I can be reasonably sure I will not need a cab ride today. I’ve had some friggin’ surreal cab rides. Hey, when a normal cab ride is one where you’re asked if you’ve seen the Bone Collector before you are asked where you’re going… let’s just say I’ve had horribly surreal cab rides. Tip: If you call the dispatcher for a cab, make sure they are sending a cab driver who doesn’t moonlight as a ventriloquist, or who stores his dummy in the trunk. He will try to show it to you.

Fine, I digress. I am trying not to think too hard on tomorrow. It’s an interesting position: courtesy of the orthopedic oncologist, I know it is lymphoma. That is a lot more comforting than you might realize, because I still have that lingering, nagging feeling I’m just going to be set adrift. I know I’m not. I know they had a tumor there that pretty much locked in the “yeah, not ideal, not friendly and very not normal” call, and the last week or so has been spent trying to figure out b-cell, t-cell, originating here, on what gene, at what point of cell development. I know they might not be able to tell me everything they’d want to know tomorrow, either because some stuff takes more time, or they need a little more information from elsewhere. Or there might things that elude them, because not otherwise specified happens in lymphomas, too, kids.

So the orthopedic oncologist did me a huge favor, really. The completely bizarre thing is I am not sure if I’m excited to just start getting this bullshit all behind me (well, yeah, I know that I am) or if my need to bury my head in just about anything but thinking about tomorrow is because I’m slightly uneasy I’m going to hear something completely out of left field in terms of craptacularosity.

I know that I’m essentially trading my current state of crap for a new state of crap (immunomodulators and biologics, if not chemo and then immunomodulators) designed to ultimately lessen the baseline level of crap. Okay. I don’t like it (who would?) but after seven plus years of nearly being housebound, and then three years of being essentially housebound, even my anti-social self welcomes the idea of a change of pace in misery if the outcome means I can go be the ant at someone’s picnic ray of sunshine I really am.  It also scares the living shit out of me (what? The treatment or liberation from these four walls? Yes. And yes. I’m worrying about the former because focusing on the latter at the moment is just sabotaging myself. It’s way too early to start that.)

But I am a bit anxious that dealing with this is going to be a little more… hardcore at the beginning than I’d have thought. In the same vein, I’m really happy now that we looked at the ass cheek tumor — as nonsensical and incidental as it may have seemed — because even with Dr. J saying he supported the idea of using steroids to make life somewhat meaningful until we figured things out, I knew that even over the mid-term this wasn’t going to be enough. I’d feel better, but truthfully, we all knew it wasn’t going to do much to ward things off and might just make the circle around the drain longer. A better picture of what we are dealing with means a couple things: I can feel assured we’re managing this to the best of our ability. I also don’t have to listen to non-involved medical professionals tell me how wrong it is that this is just being prescribed without a diagnosis. Now they’ll say it’s wrong for other reasons, I know this… and I’ll have more justification to tell them to kindly piss off.

So I have this odd jumble of mostly positive emotions. I’m pretty well past feeling like a jackass for saying thank god it’s cancer, because in the last four months or so my whole understanding of what cancer is has changed. I’m not any more afraid of it than I was… I’m certainly in awe of how something that people always pinned as being so complicated, with complete eradication being the holy grail of medicine (cure it! Longer remissions!) throughout my childhood is not what we thought it was just ten years ago.  It’s a lot more complex and subtle than I realized. It’s a lot more complex and subtle, say the people who research this stuff, than anyone imagined. How the hell do oncologists keep up? I mean… Really.  That just takes a certain kind of nerd. That’s all I’m saying.

I am glad we’re on to something. I don’t like what I could potentially find out, but no one asked me about any of this in the first place, and I know when the shock and fear pass, I’ll pick up and get on with it. Because it’s what you do. It’s all you can do. And I knew… It was a hard thing to say honestly to my parents and Mr. Shoe… and the doctors who knew what was going down… I knew that our window of opportunity to have this end reasonably well was closing.  I knew that if we didn’t start doing something fairly soon… yes, even just prednisone, this was probably going to end really badly fairly soon. I didn’t know how soon, of course… I knew how badly, but I know how erratic things go with me. Two years, five, ten, fifteen? I wouldn’t have given me more than fifteen, that’s for damn sure. And if I said this to the wrong sort of doctor (ahem, just saying) or people who aren’t knee deep here with me (which I’m so sorry, everyone, is just about everyone except Mr. Shoe and one or two others) there was that uncomfortable sort of feeling that… well, you know, not too many people saw this change live, in-color, up close and personal. And if I don’t always look sick, I sure as hell don’t look like me. It sucks to see myself in the ladies room at the hospital and wonder when the other person came in, as I didn’t hear the door… I mean, that’s happened more than I like to admit.

I also am embarrassed to admit (but will) an elderly lady told me that I wasn’t getting water out of the faucets at the Brigham because I was waving my hands under the infrared sensor way too fast for it to register. No… it’s because there’s no CLI for these lousy institutional Moen taps!

I guess mostly I harbor my irrational fear that I’m going to be turned away without a plan. I have no reason to believe this, I know it won’t happen. But that’s the familiar fear. I’m afraid of what I might find out, but most of all I feel antsy about moving forward. I want to move forward. I can not be moving forward fast enough (therefore, time is standing still today.)

I have picnics to crash, kids. Picnics to crash.

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Uncategorized | Leave a comment

Insert Header Here

I totally suck at titles/headlines/captions, you name it. We’ve had this discussion before. As you can see, I obviously haven’t improved in the area and at the moment the post takes priority. (Those so inclined can argue amongst yourselves about how the header/content relationship impacts initial page views and overall return visits in other settings and report back to me later. On second thought, don’t. Just don’t hold it against me when I write about compiling in Fortran and title the piece “Godzilla Regurgitates Tokyo in Mothra’s Expensive Gamera-shell Suitcase!”)

Yesterday I saw the orthopedic oncologist so he could see how my dented ass cheek was doing. The hookwire grab at the tumor was quite nifty, I guess, and spared me an L shaped incision that would be 4-5 inches on each branch. I said, “Yeah, but man, that is a dent and a half.” And he apologized, which I thought was really sorta cute.  The tumor looked like… well, like it probably ought to. They could tell that that was what they’d gone looking for.

See, here’s the deal: There are a bazillion ways from Sunday that you can look at things, and sometimes the easiest ones work out just fine and it saves time and effort (and money) if it works that way. So they took out the tumor and some surrounding muscle, flash froze some and looked at some right there and then sent the rest off for however it is they mount those slides. From the “right there” look they knew they had something that was consistent with the needle biopsies (aside from the fact he said it was clearly nodule-rific looking, which is promising all round. from what I gather). From the next phase of flow cytology, which involves separating cells, sizing cells, and running them under frickin’ lasers, looking for various types and surface markers, they found that there’s some type of lymphoma…


This is where the poor doctor looked all sad. I mean, he did. They couldn’t tell which one. And the surgeon, I gather, deals with other sorts of cancers — probably things like sarcomas. Or boneomas. I don’t know. Boneoma sounds friendlier than real osteo- sorts of lesions, though, doesn’t it? I mean, it isn’t the most usual thing to have a lymphoma initially appear in one’s butt muscle, and the lymphoma doctor is more likely to see it (alone, or in conjunction with other lesions) than the orthopedic guy. So because he was really all bummed out (he said this, irony noted) he called my lymphoma guy at Dana Farber (who I suspect is mildly amused, if not surprised, that that was what they’d found) and asked if that was… you know… usual. It’s all these lymphoma cells and they don’t know exactly what that all points to. He was really, really hoping it would be black and white.

The good news is: in cases with histories like mine, where grey is the new black, and even in cases where  maybe you could expect more of a straight away answer, the first machine run cytology tests often aren’t enough to clinch what you need to know. Hence the removal of the whole tumor, and the freezing and preserving process. Because some poor pathologists get to sit and look at the cells under a microscope… stain for similar surface markers as well as possibly some new ones, and count the number of similar or dissimilar or conflicting ones in a given sample and plug that information into some sort of weird ass Cosmopolitan-Quiz-for-Oncology-What-Sort-of-Kisser-Is-Your-Lymphoma algorithm and see what comes up. It might be that a few candidates fit, too. I guess. At any rate, Dr. J at DFCI assured the surgeon this isn’t a loose end (irony noted again) and is more what they expect when someone comes through with something that’s not clearly a giant, swelly, pissed off, malignant lymph node.

I think that’s the thing: You always think of lymphomas as Hodgkin’s or Non-Hodgkin’s, and truthfully, no one can keep straight which one of those tends to suck more. But both of those lymphomas have multiple types (I think they’re trying to toss Non-Hodgkin’s as a term anyway, because there are so many more that are so diverse within the classification that it’s not saying much at all). Hodgkin’s has fewer subtypes, but I know the non-Hodgkin’s number in the twenties and thirties, and some of the subtypes there have other subtypes that look alike, but… are different enough that it’s a good thing to know what you’re dealing with, especially when it’s something that is happening at the age of 37. Not that it happening at a younger age is bad, good, or indifferent, I gather, but since I am younger than the average person with an indolent lymphoma (I can say this without reservation — although it happens enough that I don’t feel like a total freak), it is a really good idea to figure out as much as is possible, because these tend to be chronic things, not terminal things, even in an older population. So chances are good I’ll be chronic longer just based on my age now, and medicine changes fast.

Yes, that’s exactly why it seems like things take longer to diagnose nowadays, folks. Because we know more, and knowing more means that we can do better. Sad fact is, untreated it probably would take me out sooner than I think, but not in the next few weeks or months. We can afford that. Before these sorts of tests, I’d be… well, it’d suck a lot worse, that’s for damn sure. Because as much as it sucks, it can always suck worse. What’s up with that?

Dr. J at Dana Farber suspects that we might have a better breakdown by the time I see him next week. It might be we have enough to start moving, or that they need something more in terms of blood work (again, a baseline bone marrow biopsy is looming in my future either way, I think). No one wants to dig into my pituitary and I suspect (as do others)  the lung nodule is incidental, or at least not worth going after in light of what we have learned.

I am slightly freaked out by how okay I am with this, too. I mean, yes, it sucks. I knew that. It feels wrong to feel relieved to hear that it’s lymphoma of any sort. But I could hear worse things. I told the surgeon this yesterday. I could have heard it was mostly normal, it’s probably nothing, and have it written off again (and again) as evidence grows that while some things are likely unrelated, a decent amount of these issues have a common bond. I could have heard it was something obviously, clearly, very, very bad. A carcinoma there would be… bad. It’s not a good thing, but there are all sorts of things that can ruin your life that aren’t lymphoma. Knowing doesn’t change that it sucks, but it changes how we approach it.

Because finally, dammit, we know generally what we are approaching.

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Uncategorized | Leave a comment