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…