Life, mundane and otherwise

Today has been a bad day, foodwise. A blast from the past, really, as my food regime has been pretty easy of late. This is thanks in large part to Kimberly’s inspired invention of what I call Instant Breakfast Plus, which is Instant Breakfast powder mixed with half evaporated milk, and half regular milk. The evaporated milk is higher in goodies like calories, without being too hard to digest. It’s become a major part of my diet.

Today, though, I foolishly tried having an Osmolite before having my first Instant Breakfast, and that was NOT a good idea. Nothing major, (meaning no vomiting) but bloating, nausea and cramping, and nothing’s gone down very easily all day since. Foo.

Tomorrow I’ll go back to my previous order and routine. That’ll be easy, since I went to Costco the other day, and discovered that not only do they sell 8-packs of evaporated milk for 2/3ds the cost per can, but they also sell big boxes of Instant Breakfast powder at a good discount I haven’t even precisely figured out yet. Yeah for Costco! (THAT’S what we should have given the Iraqis!)

I had another physical therapy appointment today. We worked mostly on my trach scar, which has been very tight. I felt a lot of stuff loosen up, including some freeing on my breathing as my throat relaxed. I feel like my body has a pretty strong reaction to being touched there, and the whole “knife cutting into my throat” experience probably affected me emotionally as well as physically, even if I was unconscious and on drugs to make me forget it all. It wouldn’t surprise me if I’m unconsciously holding muscles there differently after the surgery.

Thursday we have another follow-up appointment with Dr. Futran. Kimberly and I are working on our list of things we want to talk about during the appointment, as well as the larger list that I’m thinking of as the “Guide to Surgery I Wish I’d Had.”

Now that Kimberly’s all excited about audioblogging, we’ll probably be posting a clip of me talking soon, so that all you folks who are wondering how I sound can hear. We’ve also gotten a request for the sound of the pump, which we’ll do someday when I’m not as queasy as I am at the moment. And I’ll have to figure out how to get the pump to dial the phone. 😉

Meanwhile, in world news, we’ve had some good stories. The proud and nationalistic Iraqi people have a symbolic gesture that may really mean something to them. And our Supreme Court decided that the Magna Carta and its philosphical and legal descendents like habeas corpus might not be such a bad idea, really. Steps in the right direction, and I’m a little less worried about our future.

(Now if only we could figure out how to be prudent and watchful without shutting down the entire city of Boston for a week, or warning boaters that any bit of floating debris could be wired by terrorists to explode. We may have more to fear than fear itself, but fear itself has gotten pretty dangerous.)


Months, that is, since Paul’s surgery. And things are better than they were a month ago.

Feeding is better. For the past couple of weeks, Paul has been able to get enough calories. In the past few days, he has been so successful that he’s regained a pound or two of the 8 pounds or so that he’s lost since the surgery. Unfortunately, he has to spend a lot of time {whirr-click-click-click} hooked up, but there’s a lot less discomfort than {whirr-click-click-click} pre-pump.

Swallowing is better. Hearing that from the speech pathologist has improved Paul’s spirits considerably. He continues to nibble on Cheerios, Skittles-type candies, and the occasional English muffin with peanut butter. He has also been chewing gum recently, as a way to stimulate his saliva production, so that it is thinner and less sticky. The cold water “swallowing practice” is not yet well established; we’re going to work on that.

Swelling/scarring/range of motion is better. The physical therapy has been helping on a number of fronts. I’ll coax Paul outside for some more photos soon, although I think that the improvement is more palpable than visible, especially later in the day (when the swelling is more noticeable).

Attitude is better. Paul’s feeling sluggish, and wanting to do something to change that, is a big improvement over last month’s bouts of despair and hopelessness. Chores are good. Treadmill is good. Thinking about the future is good.

Medical billing is… now, that would be too much to hope for, wouldn’t it? However, the statement from MD Anderson arrived yesterday; looks like Christina sent it the day that I spoke with her. And, as near as I can figure out, there aren’t any unexpected charges, and Group Health has been paying just about everything since Paul (more than) met the stop loss. (They wouldn’t cover the dentist Paul saw at MD Anderson, but we had been warned that is often the case, and it’s pretty clear on our insurance policy that they don’t, so fine.) So maybe medical billing is better about like swallowing is better; not as much as we’d like, but moving in the right direction.

Agriolimax reticulatus

A not altogether surprising thing happens when one spends a majority of one’s time lying or sitting about, pumping fluid into one’s gut, and napping. After a rather short period of time, physical strength, flexibility and stamina begin to fade. This is particularly true if, as a warm-up, one has been through major surgery and a couple weeks in bed, and has not really gotten back one’s strength in the first place.

All of which is a long way of saying that I feel like a slug.

Luckily, the insane heat wave has gone away, so that I’m able to once again think about exercise. This week I’ve been trying to build up my activity, mainly by doing chores around the house. And today I went crazy: I not only spent 30 minutes on the treadmill, but I went out and weedwhacked our side yard. Yippee!

Past experience has shown me that shedding my molluscoid qualities will take time. It’s particularly tricky because of my heart condition. It’s easy to wear myself out, without actually feeling tired. It’s as if my body invisibly “borrows” energy from the next few days’ accounts, without it seeming, today, as if I’ve gone into debt. So a workout that feels mild to me in the moment may actually be quite sufficient, and doing more will leave me wiped out in the following days. Slow and gentle are the watchwords.

Which is hard when I’m tired of feeling like a slug and want to dive right in. Or when I’m trying to build up, and it doesn’t seem as if I’m making progress. None of the training limits and self-knowledge I used before my heart got bad are appropriate anymore. And it’s hard knowing when I’m tired because I’m tired OUT, or when I’m tired because I need to do MORE.

Anyway, I’ve got to do something, lest someone pour salt on me. I’ll keep you posted.


First, let me say that I have been disillusioned. When I called Group Health Customer Service today, the person who answered my call was not a flower; it was Marcie. I checked to make sure I’d heard correctly. “I’m sorry, your name is…?” “I’m Marcie,” she chirped. Marcie. Gone are my fantasies of women with alternating aliases (“Do you want to be Hyacinth today? I’ll be Jonquil.” “Why can’t I be Rose? I never get to be Rose.”) or a strange Group Health hiring policy. (“Hmm. Your middle name is Buttercup, Ms. Jones? Well, then, it turns out that we can hire you… but you’ll have to use your middle name at work.”)

Second, let me say that I have been disappointed. Having waited – none too patiently, I will confess – for 3 weeks to receive the Annual Limit Tracking Summary (ALTS) from Group Health, and having found – gleefully, and with a certain amount of disgust at its obviousness – the error within 15 minutes of laying eyes on the ALTS, I was hoping – naively, perhaps even foolishly – that I could get this sorted out today. I was wrong.

While Marcie could see that the ALTS had been sent to us, she could not actually see the ALTS. She could see the Explanation of Benefits form with the offending $1560, but she couldn’t do anything with it.

“Well, I guess I’m going to have to send this to the auditor. What would be a good number for me to reach you at when I hear from them?”

I gave her my cell phone number. “And how long will that take?”

“Oh, it will be a few weeks. They’re pretty backed up over there.”

I explained that I had waited 3 weeks for the ALTS, and that we had an outstanding bill from UWMC for which they wanted payment, and that it was $1560 higher than it should be because of Group Health’s accounting error.

“I’m sorry, hon. I’ll put a rush on it. That’s the best I can do.”

At least she didn’t say that Group Health would refund any overpayment that we made. I think I like her better than the flowers.

Annual Limit Tracking Summary

That’s the name of the form that – wonder of wonders – we received from Group Health today, only three weeks after I requested it. Not surprisingly, the first three pages of the form are an explanation of our policy’s deductible and stop loss for both in-network and out-of-network care. (At least in a form the explanation doesn’t seem condescending.) The fourth and fifth pages have descriptions of the claims that have been applied against the deductible and stop loss. The numbers for the out-of-network stop loss add up to a tidy $4000, just as they should. The number on my spreadsheet is much higher. Time to crosscheck.

It turns out that the error is remarkably easy to find. It’s in the accounting for Paul’s hospital stay, for which the bill is enormous. I look at the bill and think of Monopoly; land on UWMC, pay $50,000. We hadn’t yet reached the stop loss when this bill was processed by Group Health, so they were covering 70% of cost. $6400+ for 8 days on the nursing floor; they pay $4500, we pay $1900. Check. $5200 for 2 days in the ICU; $3640 for them, $1560 for us… Hmmm. That $1560 as our responsibility is on the Explanation of Benefits form – and therefore on my spreadsheet – but it’s not on the Annual Limit Tracking Summary. The items and amounts before and after show up, but not this $1560… which you may recall is just about the amount over the stop loss that my spreadsheet showed.

So… problem discovered and identified. I’m hoping that a call tomorrow to one of the Group Health Customer Service flowers will get it solved as well. (Wish me luck.)

Continuing my education

I am licensed by the state of Texas to practice architecture. Each year, as well as requiring that I pay several hundred dollars for a small robin’s-egg-blue piece of cardstock stating that I am so licensed, Texas requires that I complete eight hours of continuing eduction. And each year, one of those eight hours must be related to barrier-free design.

It’s not easy to find a good one-hour continuing education course, let alone a different one-hour course each year related to accessibility. So, for each of the years since Texas instituted its CE requirements, I’ve logged somewhere between 2 and 6 of my required 8 hours of CE taking classes on accessibility.

Today, I did my accessibility hours for this year. From 8:00 a.m. ’til noon today, I got an overview of the changes to accessibility requirements that will occur in Washington state next week, when the state finally adopts the International Building Code, and in the next couple of years, as revisions to a couple of national accessibility standards are adopted.

And you wouldn’t believe the changes! Stair handrail extensions are getting shorter(at the bottom only). Van accessible parking stalls may have a lower clear height (the same height that is standard in the rest of the country, as Washinton’s eccentric amendment requiring more clearance in going away). The grab bar on the back wall behind a toilet may be 24″ long, rather than…

Oh, have I bored you completely? Sorry. I’m a bit of a code nerd, so I enjoyed learning all these little details. And the presenter was funny. And I’d brought a double latte with me, just in case. And, while I think about accessible design frequently, I don’t have to think about finding another CE course on it until next year.

Please remit

Yesterday, we received a bill from MD Anderson Cancer Center in Houston. It has been over 4 months since Paul saw the doctors there, and this is the first billing paperwork that we’ve seen from them. There have been a couple of “Explanation of Benefits” forms from Group Health pertaining to Paul’s appointments there, but not enough to cover all of his appointments, and nothing from MD Anderson. While I have wondered about the charges, I have not been willing to initiate a conversation with them about their billing.

But send me a bill – especially a confusing and incomplete one – and I’ll certainly react. The bill showed a “balance forward” of several hundred dollars in both the “pending insurance” and “patient balance” columns. Hmmmm. For it to be a balance forward, shouldn’t there have been a previous bill on which the amount was a current item? And of course, since the amounts were shown as balances forward, there was no listing of the physicians’ names (or numbers, as that’s often all that shows on the bill), appointment dates, and charges.

So, today I called MD Anderson’s toll free Customer Service number, and spoke with Christina. (Christina? Maybe real names, rather than flower aliases, are the norm at MDA.) Apparently they’ve been having some problems with their accounting software, so that some people who should’ve been billed haven’t. This problem with the software was recently fixed, which is why we got a bill. I said that, before paying anything, I’d need a complete, detailed statement of Paul’s account. Christina said that she’d be happy to send that to me.

Then I asked about the $400 deposit that they had required us to pay before seeing Dr. Weber. (When we were there, we hadn’t yet paid any of Group Health’s out-of-network deductible for the year… so they collected the entire amount from us.) Oh, Christina said, that’s showing as a credit on your clinic account. (As at UW, the doctors’ fees and the hospital/clinic charges are billed separately.) The $400 didn’t show up on theclinic portion of the bill as a credit… but perhaps I expect too much. I told her that Paul had been there for a second opinion, that there wouldn’t be any clinic charges as he was treated elsewhere, and would she please apply that amount to the physicians account. She said that she would put in a request to transfer the credit.

I neglected to ask how long I should expect these things to take. I wouldn’t be surprised to see the statement from MD Anderson before the statement from Group Health that I requested almost 3 weeks ago.

Barium swallow

I had a follow-up modified barium swallow test today. I was quite worried about it, fearful that it would show no changes since the one at the end of April. Last night I had several related dreams. The one I remember is being invited to an award dinner at a restaurant, and following several people in, who walked directly into the back of the place to their table. As I went in, the room suddenly became very small, and for some reason I had to step up onto a chair and walk across a table onto another chair to follow them. And then it turned out I was at the back wall of the room. I couldn’t follow them, because I couldn’t walk “into” the wall.

Luckily, the test this morning showed important positive changes since April. Not that I’ll be scarfing hot dogs on the Fourth of July*, but improvements none the less. It’s clear that sensation in my throat has improved. I’m better able to feel the stuff going down, and clear any that seems headed for my windpipe. In fact, I don’t think I aspirated anything this morning, which was a big change.

We discovered that turning my head to the right (the side the surgery was on), with chin slightly down, enables me to clear things more swiftly, and with somewhat less “pooling”, which is what they call the collection of fluid that doesn’t go all the way down. This suggests that we may be able to train me to take best advantage of whatever function I do have.

We might have gone further, but by the time we’d gotten that far, my swallowing muscles had noticeably tired. With several swallows per spoonful, and several spoons tried, I’d done a lot. Also, that barium is very sticky, and drying, and once you’ve had enough, it can become a hindrance of its own. So we stopped before we got to the barium “pudding”.

The good news is that the extraordinarily wary Marie cleared me for “swallowing exercises” with water, to work on building up my swallowing strength. Twice a day, I get to try half a spoonful of water, and practice a swallow-swallow-swallow maneuver. I’m allowed three half-spoons each “exercise” period. The water is supposed to be chilled, so I’ll be able to feel it going down.

So, it’s something. There HAS been change for the better, even if it’s less than I might have hoped for. I feel like I can let go of a little bit of my fear that I’m never going to really eat again. That’s a good, good thing.

*This is a metaphor. Hot dogs have too much sodium for me to eat on my diet. Burgers, though…mmmm. Maybe next year.

Driving my dessert

This evening the English Country Dance performance group for whom I play had a potluck dinner. I decided what to make for this event on Friday night, when I saw the first local raspberries in the grocery store. I still had raspberries in the freezer from last July, as well as peaches from last August. It was time to use those up to make room for this year’s harvest.

I took the fruit out of the freezer this morning, and left it to thaw. By mid-afternoon, the peaches were still a little hard in the middle, but I needed to start cooking. Peaches, raspberries, sugar, cornstarch and almond extract went into the baking dish, topped with a crumble of slivered almonds, oats, butter, flour and sugar. 350 degree oven for 45 minutes per the recipe. At 45 minutes, the kitchen smelled good, but there was neither bubbling of fruit nor browning of topping to be seen. I remembered that the fruit had been quite cold when it entered the oven… and I turned up the oven temperature 25 degrees and set the timer for another 15 minutes. At the end of that time period, there was both bubbling and slight browning, so out came the crumble for a little cooling before its trip to the party.

Twenty minutes later, I was ready to go. The crumble was still hot. However, it didn’t slosh when jiggled, so I deemed it safe for travel. I put the baking dish in a holder, wrapped a dishtowel around the bottom, and placed the whole assembly on the floor of the car in front of the passenger’s seat. And then I backed out of our driveway.

Our driveway is not flat. In fact, it is rather steeply sloped near the road. And as I paused on that steep spot to check for traffic, I noticed that the crumble was behaving like a liquid rather than a solid, which it to say that, while its container was sitting at the same angle as the car, the crumble was attempting to level itself by sliding towards the lower edge of the dish. Fortunately, it was a thick liquid (though not so thick as glass), so the progress of the crumble was slow… and, as there was no oncoming traffic, I was able to quickly relevel the car and the baking dish within. Spillage averted.

We live at the top of one of the highest hills in Seattle. The roads up and down the hill are among the steepest I have ever driven. I briefly contemplated taking the flatter “snow route” used by city buses in the event of, well, the obvious, but decided that I was not willing to go several blocks out of my way for a fruit crumble. However, I chose not the “dive dive dive” straight-shot-several-hundred-feet-down Queen Anne Avenue route, but the back route, with shorter stretches of steep slope punctuated by flatter bits of road.

Those who have spent much time in a car with me will not be surprised when I say that I like to drive fast. (We’re not talking Autobahn fast, or Hamilton fast, but I do like speed.) As a corollary, I accelerate and brake more quickly than is advisable for maximum fuel efficiency. (I drive a compact, fuel-efficient, manual-transmission car. Perhaps I should feel guilty about some quick starts and stops, but I just can’t manage it.) And driving down our hill, in the absence of other traffic, I like to coast partway, letting gravity provide the (ample) acceleration. I did none of those things today.

Today, I drove to the potluck like [what is your stereotype of an overly slow, hyper-cautious driver? insert it here]. I ac- and de-celerated slowly and smoothly. I yielded the right-of-way to everyone, whether it was by rights theirs or not.

While I drove slowly and carefully, the peach-raspberry crumble responded as if on a slalom course, sliding into each turn and incline. Fortunately, the topping had set up somewhat, providing valuable surface tension. Several times I watched the leading edge of the crumble pass the edge of the dish; each time the surface held, and the dessert slid back into place. However, there were scars. The top of the crumble developed a number of small folds perpendicular to the direction of incline.

The greatest test of the crumble came on an accelerating, slightly downhill, 110 degree left turn. I was a block away from the intersection when the light turned green. I did not want to sit through a cycle of the light, so I accelerated, and then made the turn. The crumble slid to the far corner of the baking dish, and – as I discovered at my destination – a couple of drops of juice escaped the dish, staining the dishtowel. However, almost all of the crumble settled safely back into the dish once I had completed the turn.

Upon reaching our destination, I noted that, while the crumble was only half the height of the baking dish, the entire inside surface of the dish now had a film of thickened fruit juice on it. (Good thing I hadn’t used a smaller dish.)

The entire crumble was consumed, and some time later I drove home – empty dish and holder rattling a bit on the car floorboard – like myself again.