Lots to say… later

There have been some interesting comments to my post from Tuesday. Erin asked if I’d read Hillary Clinton’s article about health care in this week’s NY Times Sunday magazine. Yes, I have, and I’ve been planning to write something about it and the other articles on health care also in that issue. Loren – a doctor in family practice near here – wrote a comment about single-payer systems that has me thinking about how such a system might work, and whether or not it would be possible to create a system that could cover the sort of treatment that Paul is receiving for this cancer. I plan to take Loren up on his offer to discuss it sometime.

At any rate, I’ll write about these things sometime, but not tonight. I’ve been feeling a little queasy this evening. Sympathetic tube-feeding distress? Perhaps, or maybe it’s really something I ate, or a bit of a bug. Anyway, I’m going to bed.

Words (high ranting content)

So we’re just going to not think about the barium swallow or the speech pathologist for a while, OK? And especially not about the idea that I shouldn’t even be trying water until sometime in JULY, implying no actual food until sometime even later. Nor about the between-the-lines possibility that we might not see improvement then, and maybe not ever. We’re just not thinking about that, right? Especially not all the time in the background. Got it? Good.

Meanwhile, I was pondering this cease-fire in Iraq that involves us using artillery, helicopters and slow-flying attack planes to defensively return fire on our positions. I’m unclear about how that’s a cease-fire, and not merely a ‘siege’, or a ‘blockade’ or some such term of military art describing a situation where you have the enemy surrounded, but aren’t pressing forward for some reason.

There’s a lot of slack use of words around this government, and the Padilla/Hamdi cases before the Supreme Court have set my blood boiling over a few of them. I’ve long complained about the loose use of the word “terrorism.” And, as I listen to recordings of the Supreme Court hearings now underway, I realize that “war” has gotten just as mushy, so that the multiplicative “war” on “terrorism” has such a vague meaning as to hide the basest forms of tyranny in the alleged pursuit of our freedom.

Congress never actually declared this war, though it did pass a resolution about terrorist attacks. (I’m going to have to go look at that resolution, since I thought it was talking about catching the guys responsible for 9/11, not any terrorist of any kind anywhere forever-and-ever-amen.) And, unlike any previous war, there’s no defined enemy, with a capital or anything. It’s not like we’ll know it’s over when we roll into Berlin, or Tokyo. So who says when the “war” is over?

The administration is arguing that the state of “war” gives it carte blanche to detain American citizens in the United States incommunicado, for years, with no review by anyone nor rights of any kind. Certainly an extraordinary condition, in direct opposition to many principles this country was founded on, and in fact, one of the things listed in the Declaration of Independence as a no-no when (the actual) King George did it. You’d think that, even if we were willing to concede such power to the President (which I’m not), we’d want to be damn sure it was only during the extremely unusual and limited period of the war. Ah, but this war against “terror” could go on forever. Heck, Karen Hughes is just a step away from claiming anyone who disagrees with the government is a terrorist. (I used to think this was the kind of stuff that only happened in places like Chile, or Uganda.)

It’s really scary. This isn’t about whether Padilla and Hamdi are guilty, or bad, or ready to do horrible things. It’s about whether regular, ordinary folks walking down the street in my neighborhood have any protection against the Feds capturing them off the street and taking them away to prison, never to be heard from, just because some single person in the Executive Branch claimed they were the “enemy.” Sure, maybe at the moment all those Executive Branch folks are pure-hearted, uncorrupted defenders of our nation, but how long until that’s NOT true, and there’s nothing we can do about it?

I wish I could feel like our fundamental understanding of our freedoms and our rights would never allow this to happen, but I keep hearing the Solicitor General making arguments that fly in the face of such understanding. And, I have to admit, I’m not too comfy with trusting the honorable restraint of the current White House. (I think all the lying has something to do with that.) OK, sure, we want to give the President some latitude to operate during a war. But this is a LOT of latitude, and a very poorly defined “war.”

It seems to me that we’ve managed for a long time to deal with very bad guys, and still give them the opportunity to go before a neutral party to tell their side of the story. It’s not like we even have to let them go, just give them a hearing where the government has to provide some reasonable cause for holding them. Without that, we are all in danger, and from something far bigger and more powerful than “terrorists.”

OK, I’m going back to fretting about solid food now.

Swallowing: not good. Billing: hunh?

The news from Paul’s barium swallow test today was not good. Speech pathologist Marie saw only small changes from the test that Paul had just over a month ago, and considers him to still be at high risk for aspiration. We did, however, get more information from her today than we did from the speech pathologist who administered the last test. I haven’t yet been able to write about the medical details; when I try to do so, my writing ends up disintegrating into lines of “damn, damn, damn, damn, damn” across the page. I’ll try again tomorrow. The upshot is that we won’t be able to chuck the spacefood for a while. In the meantime, we’ve got to figure out how to make the tube feeding work well enough that Paul can spend some time and energy on something other than trying to get in – and keep in – enough calories.

This afternoon, in an attempt to exert control over some part of this amusement park from hell, I got out the folder full of medical statements. You know, it’s the one I labeled “I can’t think about that today. I’ll just go crazy if I do. I’ll think about it tomorrow. After all, tomorrow is another day.” Well, I don’t know nothin’ ’bout medical billing, but I do know how to put together one hell of an Excel spreadsheet. Every line item on each statement from UWMC or UW Physicians has its own row in the spreadsheet. If we have received an Explanation of Benefits form from Group Health for that item, the amounts adjusted, paid and due are shown as well. So… Two months after the surgery, there has been no response from Group Health regarding billing for almost $23,000 of surgical costs. And, when I total the amounts that are shown as “Your total responsibility” on all of the Explanation of Benefits forms, said total is $1340 over the policy stop loss of $4000. That’s a 33% overage… and that’s only on the UW part of the bill. (We haven’t yet received any billing from MD Anderson for their services, so the Explanation of Benefits forms that Group Health has sent for a couple of the appointments there make no sense.) Perhaps I shouldn’t be surprised, but I am… and angry, too. I don’t want to spend my time writing letters to or on the phone with some Group Health lackey in order to get this all straightened out… unless I can bill them for the time I’ve spent fixing their mistakes. Say it with me, please: single-payer health coverage.

Just thinking about tomorrow

Tomorrow is the two month anniversary of Paul’s surgery.

Tomorrow is also Paul’s second modified barium swallow test at UWMC. He’ll try swallowing barium liquid (thin and thick), barium pudding, barium on a cracker. (Barium on a cracker makes me think of “shit on a shingle”… which probably tastes better.) Ick. We’re hoping – fervently – that the results of the test tomorrow will be better than the last results, that they’ll show better motion of the tongue and epiglottis, and no silent aspiration. And we’re planning on some serious discussion about what to do to speed this process along.

Since you’ve been so effective with the previous visualization exercises, here are some more:

Visualize swallowing function.

Visualize Paul eating a hamburger. No, not whirled peas. Hamburger.

Visualize chucking the damn spacefood and feeding bags in the trash.

More tomorrow…

You are getting very sleepy…

Well, OK, maybe you’re not, but I am, despite the fact that I slept all morning, and part of the afternoon. I’m not sure what accounts for this. I did go for a long (for me lately) walk yesterday, and I was up pretty late night before last. That might explain it. And then, if I end up sleeping through scheduled pill times, I end up taking some of my meds at the same time, in combinations that can be pretty soporific. Or maybe it was the meds I didn’t take: I’ve been cutting back on my pain meds, and today haven’t had any yet. Or it could just be that my body decided to put all of its energy into healing today.

I don’t really know what’s going on, but it’s true that I do blame the cats for setting a bad example. Sasha was asleep on the sofa for most of the day.

Big news beside my sleeping: I’ve been able to eat small amounts of bread. Yesterday I managed to swallow most of a dinner roll in nibbles over a couple hours, and today I had about half a piece of toast. It’s not eating the way I used to, and it certainly wouldn’t allow me to nourish myself without the tube, but it does taste good, and maybe it’s a start. I have the radiology swallowing exam on Tuesday.

Political spew

Since I’ve been too concerned about my belly to rant lately, this post has a random assortment of things I’ve been saving up. Maybe getting it out of my spleen will help my mealtimes.

OK, so the rule is, it’s OK to show an image of a flag-draped, 9/11 fire-fighter’s body in a self-serving, jingoistic campaign commercial, but it’s NOT OK to show an image of multiple, anonymous flag-draped caskets in serious photojournalism. Got it. (Am I the only one who remembers that just a few months ago the Bush campaign was claiming they couldn’t understand how anyone could be offended by the image in his commercial? Now the administration is claiming the ban of photographing caskets from Iraq is based on a desire to avoid offending the soldier’s families? Um, what?)

Isn’t it about time we remembered that the ultimate governmental authority isn’t the President? He isn’t an elected King. I am the ultimate authority, and so are YOU. WE, THE PEOPLE, are the bosses in the radical theory called American democracy. And, since governing takes too much time to allow us to do our jobs, and have our happy lives, we hire these contractors, called politicians, to do our bidding in Washington. Where do they get off hiding those caskets from us? They aren’t even pretending it’s a National Security issue (which would be funny, since I think the Iraqi insurgents already know they are killing our troops.)

I don’t want TV reporters shoving mikes into the faces of families at the gravesides. Of course I feel for their losses. BUT I’m sorry, IF the families can’t cope with shots of unidentified caskets in the hold of a cargo plane, they should either stop reading the papers, or stop their children from enlisting. We have a right, and even a duty, to see those photos. This Bush “war without sacrifice” lie has got to stop.

Just don’t get me started on the National Security Adviser only briefing Republican Congressmen.

Meanwhile, critics on the right are claiming that maybe John Kerry didn’t really deserve all three of the Purple Hearts he got in Viet Nam, because maybe that shrapnel wound wasn’t more than a scratch. As if this would make him less qualified to be Commander-in-Chief than W., who bravely faced paper-cuts in that congressional campaign office in Alabama? Or is the argument that Kerry, instead of using 3 Purple Hearts to work the system to come home early, should have been smart enough to have his daddy manipulate the system so he didn’t even go in the first place? What?

So, in my attempt to understand why people support W., I’m hearing that he is “decisive”, and “steadfast”. And I keep thinking, as I hear the stories from the Woodward book, that we have a word for someone who a) makes quick decisions, b) never questions a decision once he’s made it, c) actively avoids evidence and information that might disagree with his preconceptions, and d) continues with his beliefs and actions in the face of irrefutable evidence and the contrary advice of people with far more experience. Sadly, I think that word is not “presidential”, but “delusional.”

And the saddest news of the week is that in Iraq, they have finally decided it might be a good idea to negotiate with the locally powerful leaders even if they are clerics, sort through the Baathists and only chuck out the ones who were actually dangerous, and get the UN involved in the transition to an Iraqi government. Sorta like people were suggesting a year ago. And, in the meantime, we’ve managed to intimidate, humiliate, and generally piss-off a huge swath of the general Iraqi population that we supposedly wanted on our side. Too little, too late, I’m afraid. And, to be honest, I can’t believe they can make those speeches with straight faces. (Paul Bremmer is the only person who deserves to be fired more than George Tennet.)

We now return you to your weekend, already in progress.

My very busy day. Not.

Today didn’t go as smoothly as it could have. Breakfast went in late, because we took Kimberly’s parents to the airport. So, I spent most of the afternoon sleeping it off. I did manage to get in two more meals later in the day, though it took until 11pm. I also had some of the chicken broth (via tube) I made a few days ago, which was pretty good. Between the sleeping and the feeding, I didn’t do much.

I did, however, catch the premiere of ‘Iron Chef America’, a new show on the Food Network, which is, obviously, an American version of Iron Chef. Thankfully, it doesn’t take after the absurdist one-off pseudo-pilot that featured William Shatner as the Chairman. I actually found it quite enjoyable, though the ‘Making of’ episode before was part of the fun.

They’ve done a good job of acknowledging their heritage from the Japanese show. The first few episodes feature Morimoto and Sakai as the “challengers” in a “Battle of the Masters”, and the Chairman claims to be the nephew of Chairman Kaga. The American Iron Chefs are Wolfgang Puck, Mario Batali and Bobby Flay. Alton Brown, from Good Eats, fills the roles of both play-by-play announcer and Doctor Hatori. Tonight’s ingredient was trout. There are more Battle of the Masters episodes tomorrow and Sunday. (Now I know why there haven’t been any new Good Eats episodes in a while. Obviously A.B. has been working hard on this show.)

In other news, the gross, transparent spot over the tendon on my arm graft has scabbed over, and I’ve started leaving it open to the air without a bandage. It still isn’t the most attractive thing to look at, but at least I’m free of the sense that my insides are poking out.

Let’s see, eating, sleeping, watching TV, healing. Guess that covers my complete schedule.



Yesterday was a Bad Day. Luckily, today has been better, or I’d be too grouchy to be writing this.

Yesterday started out OK. In my new life that seems to revolve around feedings, breakfast and lunch went OK, not great, but acceptably. Then somewhere in the afternoon things went off track.

I made the mistake of following Kimberly and her father into the neighborhood gourmet supermarket. In hindsight, that was pretty dumb. Before I even get in the door, I have to walk past a display of big juicy strawberries that I can’t eat. Then, just inside the door, some nice, green artichokes that I can’t eat. Now I’m in the produce section, with all the fruits and vegetables that I can’t eat. I’m beginning to get uncomfortable, so I walk rapidly ahead. I go to see if they have some non-stick bandages I could use for my arm. They don’t, but I get a breather. I decide to catch up to Kimberly and her dad, which means walking past the coffee beans, to make lattes I can’t drink, into the meat aisle, full of lovely-looking cuts I can’t eat.

You get the idea. After a little more of this, I find Kimberly and tell her I’ll meet them outside, and go stand around in the parking lot, not being tortured.

Then, when dinner went haywire, it just made things worse. Luckily, I didn’t end up puking.

So you can probably guess why I woke up in a bad mood this morning. (I suppose the dream about sleeping in a cold sleeping bag on hard, cold ground near a crime scene with the police lights flashing might have helped.) I’m really, really tired of trying, and failing, to get my sustenance through a rubber tube poking out of my belly.

This is a new chapter in the Hero’s Journey, one they failed to include in the color brochure. OK, I’ve gone into hell, slain the demon, stumbled home again wounded but victorious, but what’s with this ‘can’t eat for months afterward’ bit? Even in all the stories where the handsome, wounded outsider is nursed back to health by the young woman of the tribe, he’s usually able to go from water to broth to food in a couple paragraphs or so. Two months and still not able to drink? You gotta be kidding me. You can’t imagine how much of daily life involves eating and drinking.

It sucks. Big time.

The good news is this: today I had three meals, and various liquids via the tube, and everything went smoothly. I’ve decided to not push my luck with a fourth meal. I did manage to put away a couple crackers safely, one mini-Milano cookie with a modicum of coughing as cookie-juice kept trying to go down my windpipe, and one extremely small taste of chicken, well-masticated and very carefully swallowed.

(By the way, have I told you about how my jaw cramps when I try to chew, or yawn? My, THAT’S enjoyable. Oh, and if you’re waiting for the results of the milkshake experiment? Failure.)

Anyway, with today’s dietary ‘success’, I’m actually feeling better physically than I have all week. Calories and a quiet GI tract: who knew it could be this much fun? As I write, I’m hooked up to some more fluids (ginger ale to be precise), hoping to deal with a slight feeling of dehydration. But, despite my physical condition, I’m, shall we say, ‘in a bad mood’.

And what’s the point of a blog, if you can’t share that with all your friends? :-/


This is a placeholder for the well-written, insightful yet funny blog post that should’ve occupied this space today. Paul and Kimberly regret the absence of the aforementioned post; they were otherwise occupied. They send you the following bits of information from their day.

Paul had some difficulty again today with his feeding schedule, and with the skin graft site on his arm, which appears not to be healing as well now as it was last week. (Kimberly called Carol at UW about this, but got voice mail, and hasn’t gotten a call back.) To add to his frustration with the whole tube feeding experience, Paul visited the grocery store this afternoon with Kimberly and her father, which experience he found emotionally eviscerating (his words). He has since been indulging in some well-deserved depressive moaning (his words again).

Kimberly attempted to slow, if not reverse, the steadily creeping entropy in the house. Laundry, cleaning of litter boxes and bill-paying ensued. The cats, ever vigilant, attempted to maintain the status quo by sleeping – and therefore shedding – on said laundry, dirtying said litter boxes, and playfully scattering the envelopes from said bills about the living room floor.

The high point of the day for Paul and Kimberly was a ride in – and for Kimberly, test-drive of – the 2004 Toyota Prius that Kimberly’s parents rented to drive to Vancouver at the beginning of the week. It’s a very nice little car; if Kimberly and Paul were in need of a new car, it would be a contender… although getting used to its hybridness – such as the absence of any idling sound at stop signs – could take a little time.

Kimberly and Paul suggest that you check back tomorrow, when there might be a real blog post to read. Not that they’re promising, but it could happen.

Medical billing: the nightmare begins

About three weeks ago, the mail brought a slim envelope, addressed to me, from the University of Washington Medical Center. I was puzzled by the the envelope’s slimness; it did not have the heft that one expects from a large medical bill of the sort that we’re expecting for Paul’s surgery and hospital stay. Opening the envelope, I found that it contained a single sheet of paper. This sheet was entitled “Summary of Charges,” and it listed, in single line items, the amounts that UWMC is charging for various services, to wit:

DAILY SERVICE: 8 DAYS@ 873.50………….6,988.00

DAILY SERVICE: 2 DAYS@ 2,822.50……….5,645.00

O.R. SERVICES………………………………18,416.00

…Anesthesia, Respiratory, etc. etc. …

TOTAL CHARGES…………………………….55,863.61


My first reaction, upon seeing this, was to be incredibly thankful and relieved that we have medical insurance. My second reaction was to wonder how damn long it will take to sort out all of the costs with said medical insurance.

Today another envelope arrived, this one from UW Physicians. The five pages enclosed are a “Physician Statement,” and include billing for Drs. Futran and Weymuller, as well as Dr. Kovacs (the internist from the surgical consult team who monitored Paul’s heart condition during his hospitalization), an anesthesiologist, a pathologist, and five different radiologists. While the statement includes the appointments with Drs. Futran, Weymuller and Kovacs prior to Paul’s surgery, it does not include any appointments post-discharge, except for the barium swallow test. Here’s the damage:

New Charges on this statement:…………30,260.79

Insurance payments:………………………….-24.30


Account balance:…………………………..30,098.69

Pending insurance processing:……………29,901.99

PAYMENT DUE NOW:………………………….196.70

And, at the bottom of each page, this note: IMPORTANT: This statement reflects Physician services only. You may receive a separate statement for hospital/clinic charges.

The medical center and the doctors bill separately. Great. More paperwork. More matching meaningless codes from the UW system to other meaningless codes from our insurance carrier. At this point – 6 1/2 weeks after Paul’s surgery – the charges that we’ve seen from UW for Paul’s surgery total $86,124.40. And so far, our insurance has paid $24.30, and told us that we owe $196.70.

We have received a dozen or so pages of gobbledygook from our insurance, but I haven’t had the heart/brain/nerve to attempt to decipher them yet. It’s all just going into a big folder, labelled “I can’t think about that today. I’ll just go crazy if I do. I’ll think about it tomorrow. After all, tomorrow is another day.”

Two movie references in two sentences… time to go to bed.