I spent 50 minutes waiting to see the doctor. Was somewhat reassured when they 1) brought me to an examining room rather than his office, and 2) didn't ask my husband to come back with me. A lot of folks don't realize that these, like the word "suspicious," are telling. They're code for "this ain't good."
When the doctor came back, he shook my hand and asked how I was. I asked how HE was, then said, "I don't know--how am I?"
He whipped out the radiology report and said, "There's nothing there."
Nothing there. This is a 6+ centimeter mass that is growing--it is noticeably larger than it was a year ago, and it is even larger than it was 10 weeks ago. But there's nothing there but fat. He even took me out and showed me the MRI. It's clear as a bell, and it's fat. Nothing else.
Not showing on an ultrasound? That's not necessarily surprising, considering I'm overweight AND some neoplasms just don't show on ultrasound. Not showing on an x-ray? Even more understandable--x-rays aren't great for soft tissue masses, and, again, my weight could negatively impact the quality of results. But an MRI?
That's the standard, and, of all the imaging options, it's the one that isn't affected by adipose tissue. Which isn't to say that an MRI can't miss stuff--just last year, an MRI missed a fibroid/mass. But a clear x-ray, a clear sonogram, AND a clear MRI?
He offered a biopsy, and I've taken him up on the offer. Some folks might say I'm being obsessive at this point, but here's where my mind is:
Two weeks ago, this doctor looked at me and said, "The time for an MRI was right after the ultrasound came back negative." I don't want to be sitting in an oncologist's office a year from now, being told that "the time for a biopsy was right after the MRI came back negative."
Soft tissue sarcomas come in all shapes and sizes, and, while none of them are GOOD, some are particularly BAD, and the prognosis can be devastating. This is especially true when they've been missed, have had ample time to have their way.
So tomorrow I'll call the insurance company and figure out whether or not they'll pay for a biopsy performed in a "free standing surgical center." Then I have to figure out if the surgical center will send the lab work to the correct lab.
Single payer. I have a dream, you know?
Thanks for the concern, advice, and care. I'll keep you posted.
Doctor's appointment today. Orthopedic surgeon a couple towns over. On the bright side, the traffic was greatly reduced, thanks to the wingnut teabaggers shutting down the government. On the not so bright side?
Doctor said just what I feared he would--that my PCP screwed up, that she should have ordered an MRI the instant the ultrasound came back showing nothing. In other words, I should have had an MRI over a year ago. Instead, this thing, whatever it is, has had an extra 16 months to slowly gain ground.
Thanks, Dr. White. In case you've ever wondered why I abruptly stopped seeing you? It's because you always left me feeling I was getting the least you had to offer.
MRI scheduled for next Monday. Then I'll be seeing the Ortho guy again. He was good--better than the online review sites led me to think he would be (no, I don't make decisions based upon those, but it's nice to see how folks feel they were treated). He even refrained from pulling a "nameless female PAC from Ogden Clinic who has a boy's name" act and rolling his eyes and telling me that he didn't have time to read the paperwork I'd brought in. In fact, he read what I brought in (labs and a previous radiology report), then asked if it was okay to make copies for my file. It was nice, not being treated like a dull-wit who doesn't have the vaguest clue.
One small complaint--the Ortho guy's receptionist was a rude hag. Impatient, imperious, clearly irritated by my existence. I can understand that at the end of the day, but when the office has just opened for the morning? Paste a smile on, sweetheart. I may have cancer, and I put one on for you.
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My boy had an appointment today, too. With my old urologist. As feared, rather than addressing the actual problem (which is not even vaguely foreskin related), he began squealing about circumcising my son. Because slashing off a perfectly normal, functioning, highly innervated part of the penis is, of course, what American doctors do when faced with the fearful foreskin. Never mind that the rest of the western world is overwhelmingly intact. Never mind that nearly 65% of American newborn boys are spared genital modification. We still have a generation of circumcised doctors who still turn a profit from performing unnecessary surgery on boys. So we're left scrambling, trying to find a less barbaric doctor who knows more about the foreskin and is capable of addressing the actual issue rather than focusing on my son's foreskin. I swear, is everyone's life like this? Because it really doesn't seem that way. It doesn't seem MY life used to be this riddled with disasters and stress. Is it a "getting old" thing, or is it just ME?
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Watching Boehner flip-flop on the debt ceiling, the ACA, and pretty much everything else. Watched an interview with him, and the blustering defensiveness leaves me wondering just how scared he is? These past few weeks have given me much deeper insight into just how the "Tea Party Patriots" work. I always knew they were never a "grass roots" organization--they were put together by the Koch brothers to stir up the stupid with jingoistic slogans, whipping them into a frenzy of flag waving and immigrant/poor/women-hating. But what I didn't get was this--how were they winning these elections when so many Americans don't agree with them?
I've figured it out.
They're active at the primary level. They get out there EARLY, before any of us sane folks, and they ramrod through whatever extremist freak they're rooting for. Because the rest of us are fast asleep in our beds on Primary day, they get to choose who WE get to choose between, come the general election. So we're left feeling we have a choice when, in fact, our options have been viciously limited through Tea Party manipulation of the primaries. Yes, there are other issues, like gerrymandering/redistricting and voter fraud and widespread disenfranchisement, but the primaries--that's where it starts. THAT'S where we can make a difference.
I remember when I first heard about "Teapublicans" registering as Democrats so they could intentionally ram through the least viable democratic candidate. Because the average person doesn't vote in primaries, this wasn't hard for them to do. So, come general election time, folks had a choice to make--the clearly nutty teabagger OR the clearly unqualified democrat. Republicans who always vote red voted for their nutty teabagger regardless of how they felt about him, democrats didn't vote at all because they weren't enthused by the democratic candidate. And there you go--bagger wins, even though he doesn't actually have the hearts and minds of most people. I heard about this, and I was horrified.
How to fix it?
Start voting in the primaries. Specifically, in the REPUBLICAN primaries. No, not like the wingnuts do, not trying to ramrod through the least competent republican (they're already doing that--doesn't matter, red votes red regardless in most cases, it seems), but rather trying to bring the sanest republican through the primary so that, even if our guy LOSES, the guy who WINS isn't crazy.
I don't see another way.
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Speaking of misinformation and Tea Party hyperbole, this nastiness came across my wall the other day:
And here's the point-by-point debunking of this willfully misleading, politically charged garbage spray.. Thanks to ILLINOIS HEALTH MATTERS for the well-reasoned rebuttal.
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And that's about all. I napped hard this evening and feel more tired for the sleep. I think that, emotionally, I may be all used up. So here, have this--makes me happy, and happy is good:
Both the American Academy of Orthopaedic Surgeons and the National Institutes of Health say that a core needle biopsy should be performed by an experienced orthopaedic oncologist, yet the oncologists around here refuse to see me unless I have a "confirmed diagnosis." Problem is, the only way to have a "confirmed diagnosis" is to undergo a core needle biopsy. Which needs to be performed by one of those fancy Virginia oncologists who won't see me.
I could have someone else do it, but a biopsy performed by someone who isn't trained in handling cancers? Could contaminate surrounding tissues and increase both morbidity and mortality. According to the experts, that is.
So tell me--what am I supposed to do here?
I feel completely helpless. I guess I sit and wait 4+ weeks to see an orthopaedic surgeon and hope he'll order the MRI and then, if necessary, refer me to a good orthopaedic oncologist who will do the biopsy. And is covered by our plan.
And will agree to see me.
See how those options narrow?
And before you say, "Don't go for the worst diagnosis possible" or "don't self diagnose," I'm not--I'm looking for the tests that will tell me what this is. The term "soft tissue sarcoma" as a possibility to be ruled out came out of my PCP's mouth, not mine.
Years ago, in a fit of pretentiousness, my sister decided her kids would call me "Auntie." You know, like Dorothy's Aunt in the Wizard of Oz, only more silly/snobby-sounding? Like "AHHntee?" It's an affectation that has always driven me nuts. Our family never used that term (not even my sister, who says "aunt" when referring to parental sisters), and it's utterly ridiculous-sounding to me. It grates like teeth on wool, truth be told. I never, ever wanted to be anyone's "auntie," always wanted to be their "aunt." I approached my sister about this a few times, and spoke to her kids about it even more times, but to no avail. The kids, when they started to call me "aunt," were roundly dressed down by her, told that they MUST use "auntie" because it pleases her.
Never mind how it makes the "auntie" feel. I was reminded of how my dad used to shout at me for calling Frank "Frank" instead of "Mr. Whittemore." Never mind that Frank told me to call him "Frank," that being called "Mr. Whittemore" grated on him. Back then, my sister went on and on about how stupid and unreasonable our father was. Yeah.
Finally, about four years ago, I put my foot down. I told my sister that it had to stop, it was getting to the point that, every time her kids addressed me, I was feeling angry. I told her I'd rather her kids just call me by my first name, if "aunt" was too onerous. Her response? That she would tell her kids to stop calling me "auntie" ONLY if I forced my then-12 year old to start calling her "auntie." Period.
If the pettiness surprises you, you clearly don't know my sister. She had never been called "auntie," not in the twelve years she'd been an aunt, but now, suddenly, because I was asking to please, please not be called by a title I hated, she decided to turn the tables. This is absolutely typical behavior.
I spoke to my son about calling her "auntie," and he promptly said, "That's stupid and childish--how about I don't call her anything at all?"
And he hasn't. From that point on, he's only used her first name, no title whatsoever. And that was the beginning of him not really talking to her at all. He avoids her on the phone, he became completely withdrawn in her presence. And it's because of this--he felt uncomfortable talking to her because he thinks "auntie" is breathtakingly stupid, and didn't want to have to say it. Rather than risk running afoul of her, he just avoided her.
For years.
He's only lately having any interaction with her, and that's because she responds to his Facebook things. But I find it sad that her stupid pettiness interfered in that way. I kept close to her kids, even when the "auntie" thing was driving me buggy, and, in fact, told her kids to never mind, call me whatever kept them from getting in trouble at home.
It's a small thing, but you see, today my sister's daughter posted that it's so awful when people insist on calling you something you've asked them not to call you. And it was all I could do to refrain from saying, "Gosh, yeah, don't I know it?"
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Waiting until nine this morning to call a doctor about my arm. I guess an orthopedist? Funny, the closer I've gotten to today, the more twitchy and jumpy my arrhythmia's been. Yesterday, the lip twitch started. Just a small, irritating, hyperactive little tic that's got me feeling like Elvis. Woke up at five this morning, wowserly sick to my stomach. Paid our last rent on this lease on Friday, still no word on a new lease. Making an appointment for our boy today, too.
I need a break. Just typing that up made my heart start thwacking.
A small post-script--couldn't get an orthopedist to give a spit, so I've made an appointment with my primary care. No, not the primary care who said it wasn't something she was concerned about--I don't see her anymore, though still in the same practice. I'll go in, refuse to be weighed, and start pushing for an orthopedist and an MRI. Which is what I should have done a year + ago, but I was so relieved to hear that nothing was wrong, you know? I HATE that I still do that.
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On a sad/funny note, I was searching for a birthdate for an old classmate who's died. For that database I'm building for the alumni group. For some reason, his obituary, which I dug out of my scrapbook, doesn't have a date of birth. When searching online, the first result I got?
His son's mugshot. You see, his son has, apparently, TATTOOED his father's name, birth date, and death date on his BACK. I guess that's not too crazy (until you see the other tattoos), but I think it's the oddest source of information I've tapped in this search. And goodness knows, there are worse things to tattoo on your back.
Not sure if that's supposed to be Cliff, Robert, or Jason. Just saying that likely made a Metallica fan explode.
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Back from the doctor's office. Where I was told that they don't know what it is, how about I see an orthopedist.
I PAID for that! 25 bucks I dropped for that when we can barely make the RENT! And then? Then they recommended an orthopedist who ISN'T COVERED BY MY PLAN! The three I can find who ARE? Two aren't board certified, one IS board certified, but has an atrocious reputation and doesn't operate out of the ONLY hospital I'm approved for, and all describe themselves as "spine and sports" orthopedics.
SINGLE payer! This jumping through hoops bullshit is exactly that--BULLSHIT! I've been on the phone to my insurance provider three time, and my PCP twice, just since NOON. That doesn't count the calls to various orthopedists. And after all that, what do I have?
SQUAT! No appointment with an orthopedist, no answers, no MRI lined up, NOTHING. Oh, and to top it off? An MRI "might" be covered, but it might NOT be--who knows? I'll bet my insurance company does, but they're playing it close.
Two hours later. I was just turned down by six different ortho offices--apparently spines and sports are where it's AT. Lumpy, tumorous arms just aren't glamorous enough. All of them recommended I go with the guy my PCP recommended. You know, the guy who isn't covered by my plan? Wound up going with someone three towns and vicious traffic away, not because he seems particularly competent or a good fit, but because he's who'll see me AND is covered by my insurance.
And he can't see me until the middle of next month.
American healthcare. I'd laugh, if my upper lip would stop spasming long enough.
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It's been an exhausting day. Exhausting and super-duper irritating. Ever spend five minutes listening to a receptionist chomp gum and snort/grunt through her nose while she takes a note for you and checks your files? I have. Today, in fact. Began to worry she was eating the patients.
It was almost as irritating as someone naming their kid "Consatyn."
Consatyn.
Hey! Hey, you! Yeah, the one with the flowered acrylic nails! CONSATYN isn't a name! Okay?
Used to be a boy in my high school, in my grade, named Robert. His dad was the coolest crossing guard ever, used to dress up as Santa each holiday season. Solidly nice man. And Robert seemed a nice enough kid, though there was an odd sort of edge to him, a . . . creepiness to his nice, if you know what I mean? Ever see William Mapother play a creep? You know, like "Ethan" from Lost or the pimp from Justified? Like that. Too nice, too patient, too . . . edgily weird with a smile.
Anyway, I didn't see Robert for a few years after graduation (or as close to graduation as I came). Then, one night, my best friend and I were sitting in our usual restaurant, studying for midterms or finals (don't remember which) when suddenly Robert showed up. My friend liked him (initially), and so his vaguely drunken cowboy self was invited to sit with us for a few.
A "few," which panned into a couple of hours. We couldn't study, we couldn't quiz each other, we couldn't transcribe notes because Robert wouldn't let us. In fact, Robert kept getting more and more creepy and "hey, let's party"-y until we finally made some excuse and beat a hasty retreat.
It was a few blocks away when we realized we were being followed, and pretty aggressively. Whomever it was? Wasn't looking to be sly. This was big, obvious lane changes, swerving, flashing lights, etc. As we were unaccustomed to being stalked by creeps, we actually didn't realize it was Robert until he RAN US OFF THE ROAD AND UP A CURB in his big red and white pick-up truck. It was then we saw him behind the wheel and understood. What did we do?
We raced for the cop-shop, which was only five blocks away. This was, of course, in the days before cell phones, so getting to the police station was the only route we felt we had open to us. He followed us right to the driveway, then peeled off and raced away. In other words?
He knew exactly what he was doing. If it had been anything less than creepy, he wouldn't have fled when he realized where we were headed. Sadly, stupidly, we didn't report him. We figured it was a bad move borne of booze (these days, I'd call the cops for the DUI as well as the stalking), and went on home.
The next time we saw Robert was, again, in our restaurant. He was there specifically for us. This time I told him to get the hell away from us. He became belligerent and bullying, and I called the restaurant manager, who told him to leave or face the cops. For weeks after, we had waiters and cooks walking us to our car each evening, just in case. He followed us one more time, and then disappeared.
I was reading the paper this morning and spotted his mugshot. He looks like a man who's done some major meth over the years--you know the look. Those cute boy cheeks and bright eyes are gone, gone, gone. And what's he in for?
Assault and protective order violations.
Gosh, didn't see that one coming.
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Reading about online yesterday, stumbled across THIS GEM. Is it Kansas? I've lived in Kansas, I don't remember it being quite this bad. Of course, I was a kid, I lived on base, so maybe I was sheltered. Or maybe times have changed. Maybe people are stupider, or maybe they just feel safer and more comfortable openly splashing their idiocy about. Or maybe it's not Kansas at all, maybe it's just this variety republican? Whichever, whatever, you've got to ask yourself about the people who vote for creatures like this. I mean, if you vote for a racist, doesn't that make YOU a racist, too?
I think it does.
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Well, since I'm on a roll, let's talk about gun control and the New York Daily News. Their recent headline?
NY Daily News Cover
You know what? I'm not usually a big fan of visual media histrionics, but I have to say, I agree. It is all for nothing if we still have gun show loopholes, still allow private sales/transfers without background checks, and still allow high capacity clips and ARs. It's ridiculous to even call that a real effort to change things. How it is that Americans got to this state, I don't know. It's like we're absolutely incapable of assessing risk, we fear the phantom home invader when, fact is, we're FAR more likely to be killed by an armed spouse or relative than by a stranger. There are people who carry concealed, but don't put their kids in car seats and let them pilot ATVs at five years old. We ban drop-sided cribs for killing 32 babies in TEN years, but ignore the fact that medically unnecessary routine infant circumcision kills 100+ baby boys a YEAR. Do Americans just not know how to gauge risk?
And speaking of risk, I'm going to scream the next time someone says something stupid like, "Guns don't kill as many people as CARS, should we ban them, too?" It's a dull-witted, disingenuous argument, almost as bad as "guns don't kill people, people kill people!" A few things--one, we DO ban cars deemed unsafe (and regulate the living daylights out of the ones that are considered safe). Two, cars, when used correctly and according to the manufacturer's directions and the attendant laws, aren't LETHAL. Assault rifles are built to kill people. When used as intended, they are lethal. And three?
In an increasing number of states, guns DO kill more people than cars. It won't be long, if we continue as we are, before guns kill more Americans every year than cars. Stick that in your pipe and smoke it.
I keep getting these wowser woo things coming across my wall on Facebook (I know, who'da thunk?). You know, this berry cures this and this powder cures that, and if you can just cut out sugar/increase your body's alkalinity/deep breathe/leave cut onions around/whatever, you'll be cured/healed/protected.
To quote the wonderful Tim Minchin, A small crack appears In my diplomacy-dike. "By definition", I begin "Alternative Medicine", I continue "Has either not been proved to work, Or been proved not to work. You know what they callalternative medicine That’s been proved to work? Medicine."
Just recently, I got some greasy pile of dung going on and on about how our blood is "highly magnetic," powerfully so, because of all the IRON in it, and how magnets, therefore, manipulate this iron and effect magical woo cures . . . oh, I can't. I just can't. Here's what I CAN say, though.
That's right! If you support marriage equality, the Catholic Church doesn't want YOU partaking of the body or the blood of Jesus. Because it's not enough to cough up tithe or continue to claim membership despite the church's deep misogyny and historic tolerance of rampant child molestation (and dogged defense of child molesters). No, no, you must also be utterly intolerant and totally unwilling to support equality for people who aren't exactly like you. And if you're not willing to go the hater route?
Well, it's gonna be a tough haul getting into heaven, huh?
So, in other words, if you're Catholic, you'd better not support the rights of non-Catholics to engage in behaviors your church abhors. Any attempt to allow folks who are different the same rights and privileges you get? BOOM, bye-bye body of Christ!
At least if the folks you're trying to help are gay. Apparently, the handing out of said eucharist by altar-boy-groping priests is A-okay. It must be, right? After all, the church has spent decades--centuries, even--working to keep those priests on the job.
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And if none of THAT offended you, you must be my forever-friend and possibly platonic soul-mate.
So here, have some hideous home decor. It's on the house . . . get it? Get it?
No, I don't have an answer here. Saw the Urologist yesterday, one of the Washingtonian's "TOP DOCTORS" for a few years now. A bit chilly, not particularly friendly. Of course, my urogynocologist, also touted as a star in her field, was quite personable, and she totally missed the mass, so maybe personality isn't as important as skill. This guy found the mass with no effort and didn't even have to root around or make me hurt for it.
He says he feels confident it's not a diverticulum. That's in keeping with what my gynecologist (not urogynecologist) said, but he's in a better position to make that determination--he's a urologist, and he's seen the ultrasound results. He seemed lukewarm to the MRI idea, whereas my gyno and GP both want it done. So do I. He wants to do a cystoscopy (I was hoping he'd do it yesterday), and he wants to do it at the hospital so he can do general anesthesia AND do an excision of the mass, too. Get it out and get it to pathology.
That scares the shit out of me.
On the one hand, my brain cries that I want an oncological gynocologist, even though we don't know if this is cancer! On the other hand, this mass, whatever it is, is in the anterior vaginal wall, which means it's right up there with the urethra and bladder. One of the concerns my gyno had was not screwing up and damaging the urinary tract, so the uroligist is my guy, right?
Right?
He's got a gang of oncology experience, so he knows how to look for clean margins and keep track of what and where, and that was my concern with my gyno-that she'd be out of her league. So this is a good choice, isn't it?
Is it?
Shit.
I can't even express how terrified I am, how utterly tharn I've gone. I read and read and read, and nothing makes me feel any calmer or more optimistic. This feels bad, and I am scared half to death.
For now, I guess I hurry up and wait. My GP should be calling tonight so I can discuss this with her--I'm outta my league, maybe she'll have some insight about this approach, right? And then I wait on the insurance, make sure things are covered before the disaster hits. I'm already three grand into this, and that's before the gyno and urologist bills hit. Call it four grand. Add the MRI, surgery, and cystoscopy. IF those are clear, we can probably call it an even ten grand.
Oh, please.
But it's not just me. My beautiful Noodle-niece goes in for surgery next week for a recurrence of her thyroid cancer. She's 14 years old, and this is her second cancer surgery. If, at 46, I feel too young to be dealing with this, how's she got to be feeling? I'm scared for her, and I'm scared that, between the two of us, we're not ever going to get to see each other again.
