Thursday, April 30, 2015

An Educational Day at the SCCA, Lesson 6: Oncology Day Is Henceforth an All Day Event

It's stupid. All I do is go in for port access and blood draw, have what's actually a relatively entertaining conversation with my PA (who cracks me up), and spend an hour or two getting an infusion of saline and Avastin. There's really not that much going on.

But psychosomatic or no, it is exhausting. I'm tired before I leave the house. I'm tired on the bus ride to the SCCA. I'm tired sitting in the waiting room waiting for the lab. I'm tired waiting to talk to the PA. I'm tired waiting for the Avastin to show up. You'd think I'd climbed a mountain or run a marathon, but all I'm doing is sitting in a chair.

And today I went directly from the infusion center to a committee meeting at work. In retrospect, a poor choice. I think from here on out I'll be taking the afternoon of oncology days off. 

An Educational Day at the SCCA, Lesson 5: I'm Not Quite Sure SCCA Has Mastered Customer Service Just Yet

As I was leaving the infusion center today I overheard a conversation between the guy in the alcove next to me and a pharmacist. I have never heard two people, both speaking English, who were so clearly speaking two different languages in my life.

At core, the basic issue was that the patient's labs were such that they couldn't give him his scheduled infusion. But that was just the start of the problem. 

The pharmacist had come to the infusion center to let the patient know that while they had made up his drugs, they weren't actually going to be giving them to him but instead would be putting the drugs on a shelf so they'd be available for him the next day.She said this like it was good news.

At this point the patient began questioning, and nearly every question he asked began with the same word, "Who?" The patient wanted an agent. In his formulation, a decision had been made and he wanted to know who had made that decision. This, however, was not the pharmacist's view of things, and there was no way she was going to assign agency. She kept saying things like "our policies won't allow..." or "the labs were such that...." The closest she got to getting on the same page as the patient was when she confirmed that "Dr. X had been consulted." Listening to the two of them talk was actually pretty funny, at least to start.

Eventually, though, it got a little sad. Apparently the patient had to drive some two hours from his home to the SCCA and this was the third time he'd made the drive only to be told that he couldn't receive his treatment. Given this, his testiness seems pretty forgivable. If I'd been in his position, I can pretty much guarantee "testy" wouldn't describe it. It would seem to me that for patients that live close enough to Seattle to make a temporary relocation sort of pointless, but far enough away that it's not really convenient to get to South Lake Union, the SCCA ought to be able to hook up with their local doctor or a local lab so that they could go someplace local to get the key lab drawn, get an expedited result, and only if the labs were good enough make the drive to Seattle for the infusion. 

Two hours -- or rather four, since it's a round trip -- is a long time in a car for a blood draw and an hour or two sitting in a chair waiting. 

An Educational Day at the SCCA, Lesson 4: Tumor Markers Sometimes Aren't

In the past folks have asked me about my tumor markers. I know I have them, and I know they caused someone concern at some point, but I never really bothered to absorb them myself. Today I did.

Over the last eight lab results SCCA has in my medical record, the oldest three had values for the tumor markers, the next three didn't, last time's visit had a marker, and today's was still in process when I was talking with the PA. The original three values hovered at around 4.3, and last time's was seven point something, So is that good or bad?

Glad you asked. I asked too. I actually asked quite a few questions. And in sum, what I got was "eh, hard to tell." If I'm recalling all the details correctly, it seems among all the other variations in tumors there's also variation in how communicative they are. Some spew out tumor markers with every minor change, while others quietly grow and mind their own business. So until you have a whole history of tumor marker numbers and a bunch of scans that you can cross reference them against, the tumor markers don't really tell you very much.

Makes as much sense as anything in the cancer biz. 

An Educational Day at the SCCA, Lesson 3: Food Beats Timing

The Xeloda needs to be taken twice a day, approximately twelve hours apart, and with food. I had been under the impression that the most important part of that instruction was the bit about the twelve hours. Consequently, to make sure that for the two weeks of pill taking I was always splitting the days equally in half, I take my pills at 9:00. Any earlier and I won't be reliably awake on the weekends, any later and there's a fair chance I may collapse into bed before I remember to take the pills.

This, of course, meant that my pill taking and eating were generally separated by an hour or two. My bad, Today I learned that it's the food part that's most important, If the doses are only separated by nine or ten hours (or, conversely, but fourteen or fifteen hours) that's not nearly as big a deal as having food in your stomach when you take them. 

But get this. The reason for this is that food gets in the way of the absorption of the drug. So when they calculate the dosage they're not only taking into account your general size,* but also how much of the drug won't be absorbed because of the food. 

Stupidly, I was so focused on being a good patient and agreeing to do what I was told, I forgot to ask the obvious question: if this drug is so toxic and so expensive, and food prevents its uptake, why don't you give me less of it and tell me to take it on any empty stomach? 

If I remember, that question I will ask my oncologist at our appointment in May.

* I couldn't tell if it was surface area or volume that they were most interested in here.

An Educational Day at the SCCA, Lesson 2: Xeloda and the X-Box Don't Get Along

There's, of course, a raft of questions the PA asks me every time I see her. Changes in this? Changes in that? Dizziness? Falls? Appetite? Pain? Blah blah blah. She takes notes on a piece of paper that, if my estimates are correct, runs three pages of single-spaced type and she's making notes in the margins and circling words. By the time we're done, I'm really tired of talking about my insides.

One of the things she asks about is my eye, and I realized that this time I had something to say in that I used to be able to be pretty monomaniacal with my eyeballs -- I could spend six hours playing my X-Box, or reading or whatever, without any noticeable impact -- but that's all changed. The last time I tried to play a video game, after fifteen minutes my eyes were all painful and blurry and I had to stop.

Today I learned that this is because the Xeloda basically dries out your entire body. Your skin, your mucous membranes and your eyeballs. None of it is fond of Xeloda. 

Unfortunately, in the case of your eyes, the solution is to use eye drops. In my case, this is pretty much impossible in that it takes about four extra hands to get a drop into my eye. My eyes do not like to be touched, and I have never been able to self-insert an eye drop in my life.* So instead she suggested I lay a wet rag over my eyes for few minutes.

Frankly, I'm thinking I'll just hold off on the video games for awhile.

* I'd rather perform surgery on myself -- and have -- than try to insert a contact lens. 

An Educational Day at the SCCA, Lesson 1: My Port Is Broken

I learned a lot at my oncology visits today. The first thing I learned is that my port has taken a permanent vacation from half of its duties. The port is primarily designed to allow providers to easily dump chemicals into your body. Mine still does that. But there's a secondary benefit of a port, in that it allows providers to get easy access to your blood. Mine doesn't do that anymore. At this point, they can dump whatever they want into me, but there ain't no blood coming back out.

My port is now one way only.

As far as my PA was concerned, that's no big deal. If I don't mind getting jabbed in the arm they can just draw my blood intravenously, and it's all good. 

But the nurse in the infusion center had a different opinion. When I told her what the PA had told me, her response was, "She can say what she wants. We have policies." It made me laugh. But she went off to check. Happily for me, the policies would allow the drugs I get to be delivered without the confirmation of a blood return. 

I say happily as it would've meant a couple more hours in the infusion center if they had to force the port to stat working in both directions. 

Wednesday, April 29, 2015

A Few Quick Updates (Because None Really Warrants Extended Commentary)

Relevant(?) things that happened in the past few days:

My financial health advisor -- i.e., Sib4 -- has figured out what was going on with the rather large bills I was getting from SCCA. It seems my health insurance plan carries a much larger annual deductible than I had previously. Once I pay the current round, my deductible will be met and I can stop worrying that every round of Xeloda is going to cost me a few thousand dollars. So yet again, thank heavens for my job and the health insurance it provides. 

All of this is good news, as tomorrow is Oncology $20,000 Thursday. This one may be more interesting than usual as this last round was pretty terrible, particularly on my feet. It's possible the PA may elect to have me take a break for a few weeks to give them time to recover a bit more. I can't say I'd be totally opposed to the idea, though I need to balance it against the upcoming Spain & Morocco leg of the GCW Tour, which is basically just two rounds away. Thus, I might push to beat up my feet for one more round than take five or six weeks off in preparation and for the duration of my trip.

There's no need to bother looking as no new squares have been added, but I did finally figure out enough HTML to get the display on my Periodic Table page to work correctly -- at least on my computer. (No guarantees for those of you reading on iPads, phones or whatnot. I don't trust my coding skills that much.) After learning about "vertical-align: top" on some website somewhere, I started randomly plugging that command into various places in the page's HTML. Unfortunately, none of the places I tried actually worked, but with a little more searching I found a different website that actually gave me enough information to figure out where the command needed to appear. So now it all works, with the squares and text all tightly aligned and appearing where they should be. Yay for me -- especially since the last time I tried programming was probably when I was in the seventh grade and took an elective that taught BASIC on an Apple II. 

Not much progress yet on the head shrinking, as scheduling challenges will prevent me from meeting with my identified guy for a couple of weeks. I did go onto SCCA's website and located a monthly support group for my brand of cancer, so I'm thinking I'll give that a try at least once, as much out of curiosity's sake as anything else. Every cancer patient has to balance quality of life with quantity of life in their decisionmaking, but after talking with the group organizer I'm starting to realize that the default standard seems to be 0:100 when mine is more like to 98:2. It should make for an interesting evening, though it's not until mid-May. 

I guess that's pretty much it on the cancer front for now, at least until tomorrow's appointment with the PA. 

Monday, April 27, 2015

Maybe It's Just the Stations I Listen To...

...but modern radio is nearly enough to make me suicidal. 

First you've got the fact that almost every song they play is some variation of a love song. The artists are either falling in love (mostly) or out of love (occasionally), but pretty much all they want to talk about is love. Personally, I'm not at a place in my life where that's a conversation I'm terribly interested in having. 

The songs would be bad enough, but then you've got the ads. I can't recall the last time I heard an ad break on a popular Seattle radio station that didn't include at least one ad from one of the local jewelry stores specializing in engagement rings. It's like they assume every freakin' person listening to the radio is some guy getting ready to propose. 

And if it's not the engagement ring specialists, it's the local cancer centers "turning cancer patients into cancer survivors." Of course the ads don't include testimonials from the families of cancer patients who were the exact opposite of cancer survivors, which makes for something of a skewed view. And as someone who's being told by that very cancer center that my particular cancer is incurable, it's an annoying omission. 

I really need to spend more energy trying to figure out how to get my computer to talk to my stereo so I don't have to listen to the radio. 

Sunday, April 26, 2015

Every Cancer Patient Needs an Uninvolved Provider in Their Camp

I think I've mentioned that Sib4 is an independent health care provider so she understands the EOBs and bills in a way that I never will. So yesterday I took my binder of paperwork over for her to take a look. 

If I recall correctly, the phrase she used repeatedly was "They can't do that!" 

She noticed that EOBs and bills that at first identified my portion as a "co-pay" somewhere along the line converted to "co-insurance," and the corresponding amounts went up significantly. Even better, she's agreed to give the insurer a call on Monday to figure out what's going on. 

Which is great for me, but not so great for the patients who receive bills and lack the expertise -- or resources with the expertise -- to understand what's being billed and, most important, where the bill might be in error. And it seems errors aren't as uncommon as one might hope. As our medical system has grown increasingly complex, with a single event generating multiple bills from multiple sources going to multiple payers, the opportunities for things to go wrong have expanded beyond any reasonable tolerance. 

Which might be tolerable if you're dealing with the odd doctor visit for a sore throat or whatever, but pretty much isn't if you're dealing with some terrible condition -- like cancer -- that requires vast quantities of ongoing care. 

It really shouldn't be this complicated, but until that changes patients really ought to have access to someone with some expertise (who isn't connected to their insurer or provider) who can help them understand their bills -- and make sure they don't wind up paying for something that isn't their responsibility.

Neuropathy, Phase Three (Five? Nine? Four Million?)

So the neuropathy progresses. Regresses? Whatever the word in this context is for "changes and gets worse." 

On the hand front, while the cold sensitivity has yet to return (yay!), I've pretty much lost all capability for fine detail function. For example, trying to open the pop top on the dishwasher liquid bottle is pretty much impossible. I'm at the point now of having to pull a knife from the door to pry it open. Similarly, tapping on this laptop keyboard starts all the nerve endings buzzing, so there's only so much time I can do it before my fingers get so sore I have to stop. So that's no fun, but the feet are worse,

I was warned it would likely come, but I wasn't really ready for the foot pain. At this point no matter what shoes or slippers I wear -- or don't wear -- it feels like there's a golf ball under my left foot. The pain is fairly constant from the time I wake up to the time I go to sleep. This is actually more concerning for me than the fingers, as it slows down my walking even more than had already been the case and I'm not yet ready to give up my mobility. I've got trips to take and places to see, and I need to be able to move at a reasonable pace to see them. 

So the PA and I will be having a conversation at this week's $20,000 Thursday. Last time she was close to waiving away a round of the Xeloda to give my feet time to recover, but I wanted to keep up the regimen. This time, I'd be willing to take the pass. Spain is rapidly approaching, and I don't want to be limping across the country. 

My Successful Tom Sawyer Impersonation

So Friday was my first Art & Science Party wherein some friends were enticed with pizza and alcohol to come over and paint some of my element squares. 

Helium, Nitrogen, Neon, Gold, Nickel and Indigo Indium have all now moved to the done column, and my completion ratio has jumped to 30/112. At this rate, I might actually be able to complete the Periodic Table of Copyright Violations on a reasonable schedule.

And not only did I get six completed squares out of the deal, I also got a clean bathroom. There was just no way to have guests spend multiple hours in my condo with the bathroom in the state it was in. So now it's clean.* New, rust-free shower curtains and everything. 

But I think the best part of the evening is that four people who were convinced they had zero artistic talent have been proven to be wrong.** This, however, was less my doing than having one actual artist in the group who did an amazing job of coaching. I'm sure she's enjoyed her career, but I think she missed her calling. She would've been a fabulous art teacher.

* Well, it was. Later in the weekend I started a house project to change out some lighting. This requires accessing the attic through the portal in the bathroom ceiling, and so now the bathroom is a disaster again. 
** Art is good for you. Everyone should try it. 

Thursday, April 23, 2015


I don't really feel better. 

It doesn't much matter what caused the cancer, I've still got to deal with it -- along with everything else that's going on these days -- and after 317 days I'm starting to think my available resources for dealing have pretty much exhausted themselves. 

So it's time for some head shrinking, and a bit of paid conversation with an outsider who doesn't have a dog in my fight. 

The employer provides a free referral service, so what the heck. Besides, fake sympathy is sometimes easier to deal with than the real thing. 

As If Being Lonely Weren't Bad Enough On Its Own

Scientists have apparently now decided that being lonely can kill you. Slate had an article today titled, "Loneliness Can Kill You" (or "Loneliness is Deadly," depending on which page you were on), and it was just chock full of happy factoids. For example:

Studies have shown the increased mortality due to social isolation is equal to that of smoking, and twice that of obesity.

Social isolation impairs immune function and boosts inflammation which can lead to arthritis, diabetes and heart disease.

Feelings of loneliness can lead to "social evasion" which, of course, leads to further isolation.

Loneliness can interrupt sleep patterns as the lonely are prone to "micro-awakenings" -- i.e., lacking the safety of a tribe, they're continually on alert. 

Can I just say that I needed to read all this like I needed a hole in the head?*

On the other hand, it might actually explain a lot. As someone who once had a psychologist administering a Myers-Briggs assessment tell me they'd never seen anyone score higher on the introvert scale, "lonely" is pretty much my standard state. 

So maybe the cancer (not to mention the diabetes) is rooted not in my horrible diet, complete lack of exercise, consumption of alcohol, or any of the other causes that are sometimes thrown my way, but in the genes that created my personality.

And if my genes made my personality and my personality caused my cancer that means the cancer is all my parents' fault! 

Woohoo! I'm off the hook (except, of course, for the part about dying of cancer). 

I feel much better already. 

** It could be worse. Sib4 received a copy of Missoula, Jon Krakauer's new book about rape on college campuses organized around events at the University of Montana, six months before the niece departs for her freshman year at -- where else? -- the University of Montana. 

Monday, April 20, 2015

Cancer, Aging or Diabetes? Who Can Tell?

I've mentioned before the problems the Xeloda --- or previous chemo, who knows which? -- have caused for my fingernails. They're thin and they crack. Just putting my hands in my pockets or trying to open the dishwashing detergent jug can be enough to split them deep into my nail beds. 

But now there's a new twist. 

At risk of offending any old people out there, it's a fairly common side effect of growing old that your toe nails start to do weird things. Don't believe me? Go to Google, set it to images, and search on "old people toe nails." I may never sleep again. In any case, old people toe nails seem to get thick, turn yellow, and start to separate from the toe from which they are growing.

So given all the problems I'm having with my fingernails, I was sort of surprised to see my toe nails turning into old people toe nails. I was sort of expecting that if my fingernails were going to get thin and self-destruct, my toenails would do the same. But no. They're turning into mutant talon things. 

Given the choice, I'd rather have them thin and splitting. 

And I'm stating for the record that I'm drawing the line at amputation. I tried the chemo and I take the drugs, but as soon as some doctor tells me they need to take off one of my toes, I'm done. Even with my newly mutated toenails, I like my toes exactly where they are. 

I Feel Bad for Travel Agents...

...But I love the way the Internet has changed international travel. I've been booking the various components of the upcoming Spanish leg of the GCW Tour and have been pretty amazed at how easy it is. Travelocity has taken care of about 80% of the necessary pieces, and it's pretty nice to be able to see pictures of a possible hotel, map it against the various airports, train stations and tourist destinations, and then compare it directly against all the other options.

And even the weird Rick Steves recommended independent places that aren't on Travelocity or Expedia all seem to have web sites and email addresses. And these days you can type an email message, have Google translate it into Spanish (or whatever) and then when the Spanish reply comes in, automatically translate that into English. 

A couple of hours with a computer and broadband, and I've got rooms in quirky little hotels, a flight on Royal Air Maroc, and most other details nailed down. I've been able to adapt the plan as new details emerged,* and generate a pretty reasonable itinerary.

It's sort of amazing how small the world has become with the advent of the Internet. I can't even imagine trying to do this without it -- though Sib2 did remind me that before the Internet there were travel agents who would take care of all this. 

I'm not that young, but even I find that hard to imagine anymore -- which makes that image in the corner all the more astonishing. I can't imagine betting on a career as a travel agent. 

* Who knew Barcelona was like a million miles from Morocco? But no biggie. Just add a train ride and trade a few days in Barcelona for Seville and Tarifa, and the distance drops to twenty kilometers. 

And Another Thing...

If you get frustrated by your light bulb problem and so go back to bed and pull the pillow over your head, there's a very good chance that after you get back up and do a few things with the rest of your day, and then go to sleep after watching John Oliver, Game of Thrones and part of some cruddy car racing move, you're going to wind up lying in bed awake listening to the neighbor's grandfather clock chime out three in the morning wondering why you're listening to the clock chime at three in the morning and then it will chime 3:15 and then 3:30 and by then your stomach will have decided that, since you're up anyway, it could actually do with some food and so you'll have to get up and make some toast (which you'll burn since you're operating on about three hours of sleep) and pretty soon you'll notice that the birds are starting to chirp, and since these are not Vietnamese chickens you can be fairly sure that morning is coming and you'll realize that somehow an hour has passed and now it's 4:30 which is probably too late to go back to sleep and it suddenly dawns on you that you're likely going to be in for a really bad day.

Because of a stupid light bulb...

Sunday, April 19, 2015

You Know What's Annoying?

Light bulbs. Light bulbs are annoying, and I have spent this entire weekend proving it.

It used to be pretty easy. You'd go to the store to buy a light bulb and the only thing you really had to worry about was the wattage. No longer. Now you've got Edisons, incandescents, fluorescents, compact fluorescents, LEDs, and probably a dozen more I'm not remembering. Moreover, the standard comparator -- wattage -- now means nothing, a seven watt LED putting out as much light as a forty watt incandescent. 

And, of course, you've now got to choose between cool light and warm light, day light and soft light, plain light and "sparkly" light, and every other sort of "light" a marketer can come up with.

I just want a freakin' light bulb that will work in my lamp and light my room. But it's never that simple. 

The ceiling light in my living room gave up completely a little bit ago, and had to be replaced. There were three "features" of this lamp: it was about eighteen inches across, it clearly cost about ten bucks at Home Depot, and it used halogen bulbs. So, naturally, when it took it down, a good portion of the plaster underneath it came down too, having been baked by the halogen bulbs for so long that it no longer adhered to the lathe beneath it. 

Can I just say that there is no better job than drywalling a ceiling. (Yes, that was sarcasm.) 

And in the midst of repairing the ceiling and installing a new -- non-halogen -- lamp, the lamp in my entry went out as well. This one I'd put in. And like most things I do when working on a house built a hundred years ago, it was a kludged together Rube Goldberg thing involving an unswitched power line without an electrical box, a bulb fixture, a wireless motion sensor and lamp adapter, a ceiling fan cover and a reproduction lamp that isn't UL approved and is limited to a 40 watt bulb. 

Where in that ridiculous chain I lost power was anybody's guess. I'll spare the long involved story that had me standing on the post holding up the hand rail for the stairs and just say it turned out to be a combination of the lamp and bulb(s). Seems my reproduction lamp doesn't really like new technologies. Specifically, between the lamp and the motion sensor enough electricity leaks through when the lamp is "off" to keep the LED bulb generating light, but not enough electricity when it's "on" to fully power the LED causing it to flicker. 

But after four different bulbs, the lamp at least appears to be working again. 

All of which has nothing to do with cancer, except that dealing with cancer has pretty much consumed the entirety of my patience and tolerance and having to deal with this level of annoyance from a bloody light bulb was enough to send me back to bed with a pillow over my head. 

Wednesday, April 15, 2015

I Killed All My Bacteria

Well, not all my bacteria. I'm pretty sure the colonies growing in my kitchen and bathroom are still thriving, but the bacteria I need -- the ones living in my gastrointestinal system -- are apparently all dead. It seems they don't respond well to the chemo drugs. At least this is the theory my PA proposed for why the constant companion for my chemo treatment has been gastrointestinal distress.* Dead bacteria seemingly leads to a poorly functioning system.**

The solution the PA provided me was either to take probiotic pills which I could get from a health supplement store and/or eat more yogurt. Health supplements aren't really my thing, so I went with the yogurt. We'll see if it makes a difference. I'm not entirely sure how eating yogurt (or bacteria pills) while flooding your system with bacteria killing drugs is supposed to regenerate the bacteria living in my guts, but I suppose adding new bacteria is better than just continually poisoning the ones that are there. 

Regardless, if it means spending less time in the bathroom, yogurt it is. 

* Don't ask. 
** A friend tells me too many bacteria causes the same thing. This yin-yang, balance thing is starting to get old. 

Monday, April 13, 2015

I Don't Mind Paying Taxes...

...But redundant data entry drives me nuts.

What is with the Feds and a complete inability to appropriately manage data? Part of my job includes submitting FFATA -- Federal Funding Accountability and Transparency Act -- reports. This would be fine if it weren't for the fact that half the data elements we have to submit the Feds already have. So, of course, we submit our data, the Feds tell us we're wrong -- we aren't -- and it becomes our problem to sort it all out. 

Dear Uncle Sam: If you already think you know the answer, and aren't interested in making any adjustments if given conflicting information, why are you bloody well asking the question?

More problematically, yesterday I tried to e-file my taxes. Turns out, you need five data points -- name, SSN, filing status on prior year's taxes, AGI on prior year's taxes, and address on prior year's taxes -- to establish that you are who you say you are and so can file your taxes electronically. 

Excuse me, but isn't the point of a Social Security Number that it's supposed to serve as a unique identifier? And if it is a unique identifier -- i.e., I, and only I, am identified by that number -- why do I have to provide four other identifiers? And don't even get me started on the computerized voice routine you're supposed to go through to provide those multiple identifiers. 

Dear Uncle Sam: Your data management skills are atrocious, though they do make for a good distraction from cancer. Just sayin'...

Sunday, April 12, 2015

The EOB Is Really an EOC

As a patient undergoing lots (and lots and lots) of procedures, the mail I receive is not predominantly made up of the Explanations of Benefit sheets (EOBs) my providers are sending. Except they aren't. Explanations of benefits that is, as they seem to be far more oriented to the needs of the people sending the information than the people receiving the information. 

I mean, I'm a reasonably smart guy, and I'm the one sitting in the chair as all these things are happening to me, and sorting out the entirety of what I'm being billed for -- and why -- is beyond my capabilities. At best, I'm good for about 80% of the charges, which would be fine if it weren't for the fact that the missing 20% equates to a couple of thousand dollars in charges. 

By way of example, here's the list of procedures associated with my March 19 visit that showed up on my EOB:

Pharmacy, General
Medical/Surgical Supplies And
Laboratory, (Lab) General
Laboratory, Chemistry
Laboratory, Hematology
Radiology - Therapeutic
Operating Room Services, Minor
Drugs Requiring Specific

Setting aside the fact that the display fields on the EOB are clearly shorter than the display fields in the charging system, compare that list to the one I received for the previous visit:

Pharmacy, General
IV Therapy, IV Therapy, General
Medical/Surgical Supplies And
Laboratory, (Lab) General
Laboratory, Chemistry
Laboratory, Hematology
Radiology - Therapeutic
Drugs Requiring Specific

As a bit of background, note that all my visits are the same. The lab accesses my chest port and draws blood, I see the oncologist or his PA, and then I go to the infusion center and get an infusion of saline and Avastin. Unless I'm being scanned, which is a completely separate process, that's what the visit always comprises.

So here are my questions:

1. Why is there a charge for "IV Therapy" in one visit but not the other, when both involved infusions and both included the enormous charge for the Avastin (at least I assume that's what the "Drugs Requiring Specific" line refers to)?

2. If I never leave the lab, the exam room where I talk with the PA or the chair in the infusion room, why is there a charge for "Operating Room Services, Minor"? Wouldn't you need to actually enter the operating room for an operating room service charge, minor or otherwise, to attach to your bill?

3. Again, lab tests, PA, infusion. So what the heck is radiology doing for me on these visits? I mean, I can see paying for a radiologist after a scan, but a) this bill doesn't account for providers, and b) I don't remember any interaction with anything that could be called radiological. So why is the radiology facility charging me?

4. And last, while I haven't listed any of the amounts associated with these charges, trust me when I say that with the exception of the radiological services, not one of the lines is the same visit to visit. If they're performing the same routine functions, running the same routine tests, and giving me the same drugs, wouldn't you expect the charges to be consistent? I gotta say, I do. 

I'm sure -- well, sort of sure -- that there are good answers to these questions, but if I'm getting an "explanation of benefits" why does the explanation generate as many questions as answers? And with everything else that's going on, why should I have to chase down those answers?

And people wonder why medical care in America is so expensive. If you can't tell what you're being charged for, how can you tell if you're being overcharged? And worse, I know for a fact that I'm paying significantly more for basically the same care at SCCA that I was receiving at Group Health, but the federal regulations that govern health insurance prevent me from making a change until the two or three week open enrollment period that comes up once a year. 

If I was a cynic, I'd say the system was actually designed to make health care as expensive as it can possibly be. Oh wait, I am a cynic. And frankly, I think that's exactly how the system was designed.*

* Why wouldn't it be, when it was predominantly designed by doctors and hospitals?

Friday, April 10, 2015

Weird Associations

Most people I know seem to have some weird association left over from their formative years. The sort of thing where they once got sick after eating a banana, so they can't stand bananas. I've got a few of my own, but I realized today that my cancer treatment is going to leave me with two more: 

Rubbing alcohol -- I cannot tell you how completely and totally I now detest the smell of rubbing alcohol. Never again will I have a bottle of the stuff in my bathroom cabinet, and if I need to use alcohol as a solvent I'll just use gin or vodka or whiskey -- anything besides rubbing alcohol. Horrible, repulsive stuff.

Saline solution -- Before cancer, I would've said saline solution didn't smell any different from water. I would've been wrong. When they're sending the stuff into your heart and from there past your lungs and straight to your head, it definitely has a smell -- and occasionally a taste. And like rubbing alcohol, it's repulsive. 

Today's Return on a $20,000 Investment

So today was oncology day, which means that by 10:00 am I'd spent twenty grand by doing little more than sitting. (The nurse laughed when I told her that the little bag of drug didn't look like $13,000.) But in addition to drug and attention, the money did buy me some information. Specifically:

1. The highlights in my PA's hair have gone from green to a very snazzy electric blue. 

2. All my labs -- well, blood glucose excepted -- are all trending positive, and are at levels indicating that I'm continuing to be a "good responder" to the treatments they're giving me. 

3. The cafe at SCCA is actually pretty good, though they charge an arm and a leg for greek yogurt (which appears to be a small batch product from some local dairy). 

4. Although it's hard to distinguish clearly, the PA thinks most of the side effects I'm dealing with are long-term reactions to the oxaliplatin rather than new reactions to the Xeloda capecitabine (I'm actually taking the generic version). On the one hand this strikes me as good news, but on the other it annoys me. When they start you on chemo, they don't tell you you'll be dealing with the side effects for months after the treatment stops. 

5. The PA tells me I don't have to worry if a leg of the GCW Tour extends the gap between rounds of capecitabine doses. This is good as I've started booking Spain & Morocco and there's no way possible to make it sync up with the currently projected dosing schedule. 

Item #2 is really the intended return on the $20,000 investment. Still not totally sure it's completely worth it, but as far as returns go it could certainly be a lot worse.

Thursday, April 9, 2015

Here We Go Again

Tomorrow I'm back at the SCCA. I used to think of it as "Oncology Friday" (or Thursday or whatever), but I have to admit that now that I've started receiving the EOBs ("Explanation of Benefits") and invoices ("bills"), I'm finding it hard not to think of it as "$20,000 Friday."

Which of course prompts me to say once again, "To all the other people in my insurance pool -- Thanks!"

Gratitude not withstanding, I still find it mind boggling that the procedures I'll be going through tomorrow generate $20,000 in bills. And I'm not at all sure what to make of the fact that $13,000 of that total is paying for a very tiny plastic bag full of a drug that isn't even chemotherapy.*

And really want to blow your mind? Consider, returning to my last post and my calculation page, that if we assume I'm going to live four more years with an oncology appointment every three weeks that creates $20,000 in medical bills, we're looking at roughly $1.5M in treatment costs.**

Who says you can't put a price tag on human life?***

* No doubt you could get the same drug in Mexico or somewhere for like $50.
** $118,000 + (((52/3)*4)*$20,000) = $1,504,667
*** It does make one wonder, though, if the folks paying the bills would think they're getting their money's worth. Personally, I think I'd have a hard time arguing that my remaining years are worth $1.5M (but then I'm a cheapskate). 

Tuesday, April 7, 2015

Four More Years -- Or Something

A friend sent me a link to a Twitter feed that lead me to this article from MD Anderson. It tells the story of a woman who was diagnosed with stage IV colon cancer (familiar), underwent multiple surgeries (sort of familiar), declined radiation treatments (not familiar -- radiation has never been presented as an option for me), put on an oral chemotherapy drug (familiar, as I've got to believe it's the same drug I'm on) and has so far survived for four years.

On the one hand, this is good news. Four years would put me well past the release date for the new Star Wars movie, would give me ample time to drag my nephews some place cool, and might even get me to the last episode of Game of Thrones

On the other hand, it's sort of bad news. I've spent the last nine months writing blog posts lamenting that I'm dying of cancer, but if it takes four plus years for this to actually start happening I may have to change the name of my blog to the Boy Who Cried Wolf. 

It's also sort of weird in that the best thing about cancer is that it created certainty where before there had only been uncertainty. Until last July, nearly every financial decision I made was rooted in uncertainty over my potential needs as a retiree. The cancer diagnosis changed all that. Suddenly, I only had to worry about the next year or so, so the decisions became much easier. 

It would be sort of embarrassing -- not to mention financially troubling -- to actually live long enough where retirement once again came into the picture.

Still seems unlikely, though, and certainly not likely enough to warrant changing my current approach to life. There are still too many places left to see. 

Sunday, April 5, 2015

Posting May Be Light for the Next Few Days

Tomorrow I leave for Ogden, Utah with some co-workers. Based on the pictures and what little I know of the town (city?), I would normally say that being in Ogden would leave lots of time for writing blog posts. But I'm told that this trip is actually pretty intense and doesn't leave lot of free time. 

So if you don't see any posts for a few days, that's why.

But Friday is oncology day, so I should have something interesting to say about my cancer then. And apologies to those of you who have been showing up looking for cancer updates, but finding pictures of Dave and travel news. I must admit that recently the cancer's been pretty boring, which is good for me but doesn't make for terribly exciting reading. 

The Tour's Next Leg

I've been home from Vietnam for twenty-one days, which means it's the perfect time to book the next leg of the GCW Tour. So today I bought tickets for the niece and I to head to Spain at the end of June. I wanted to take her to Europe, she wanted somewhere she could practice her Spanish, so Spain fit both of our requirements.

Most fortuitously, on Friday when I was talking with a friend who'd lived in Spain about my plans, she mentioned that it was sad I was leaving when I was, as the Festival of San Fermin -- i.e., the running of the bulls in Pamplona -- would start the next day. Naturally, I made some adjustments to the plan so that we'd be around to see that.* 

Of course the universe has to balance, so my good timing with respect to running bulls corresponded to bad timing with respect to Morocco. It turns out that Ramadan this year runs from before the earliest date we could leave to after the point where the high season -- and the hot season -- begins, so adding Morocco to this leg of the tour is going to be a little bit challenging as we'll have to work within the limitations of Ramadan (i.e., a fair portion of the country will be shut down from sunrise to sunset). But if I'm going to hit all seven continents before my time runs out, I can't really pass up this chance at Africa.** Hence, we'll make something work.

In any case, the next leg of the GCW Tour is now set. 

* Now I just have to figure out how to convince the niece to take Dave and run with the bulls, cause my running days are over and Dave with the bulls would a pretty awesome picture. (Dear Sib4 -- I'm kidding, though you have to agree it would be an awesome picture.) 
** I would, of course, still like to ride motorcycles past giraffes, but that seems slightly more ambitious and thus further out and thus a lot more prone to never happening if the cancer switches gears. So we'll take the sure thing, and if the long shot comes to pass, I'm happy to have the GCW Tour include two trips to Africa.

Happy Easter (Or Your Chosen Easter Alternative) from Dave and the Minions

Saturday, April 4, 2015

Calculating the Cost of Cancer

After my most recent post on the cost associated with my cancer treatment (Yikes!), it occurred to me that I should perhaps be keeping better track of the bills -- and potentially sharing the information. If the intent of this blog is to document my "cancer experience," well, the dollars are certainly part of that. As I think about it, the cancer treatment centers -- SCCA, Group Health and Swedish alike -- all did a really good job of communicating what to expect from the treatment, and where to go for various types of assistance, but what they don't do is tell you, "You're about to receive some of the biggest bills you'll likely ever see in your life."

So for any future cancer patients out there reading this let me just say, "I'm so sorry to hear about your diagnosis, and I hate to add to your troubles, but you're about to receive some of the biggest bills you'll likely ever see in your life."

I find it sort of interesting that the service providers don't state this up front. Following my post, I had an exchange with Sib1 about what my Mum experienced when her last cancer treatment started up. Even more than me, Mum was taking a palliative-only approach to her cancer, without any chemo or other attempts to treat the disease. But, as I've found, even not doing much comes with some serious costs. And by this point Mum was retired and on a fixed income. According to Sib1, the bills she received basically sent her into a panic. Now eventually insurance did its thing, adjustments were made, and it all got sorted out, but you'd think providers could figure out someway to reach that end point without the initial panic. Hell, most of these places offer massage and a host of other services to help you deal with the stress of being treated for cancer. Wouldn't it then make sense not to exacerbate that stress with the way billing is managed?

The thing of it is, when you're first diagnosed, and you get that fight or flight response, and the doctors and everyone around you are telling you to fight, you ramp yourself up and convince yourself that you will spare no expense in fighting the disease.

But it's easy to say that you'll spare no expense when you don't have a number defining that expense. And if you're like me, you're thinking, well, how much can it be? Quite a bit it turns out. I'm nine months in the cost of my treatment -- not my share but the total cost -- has already exceeded $100,000. That's an awfully big number, and certainly a bigger number than I ever thought possible -- stupid me -- when I was first diagnosed.

So thinking it might help others if I share my numbers (as well as highlighting the absurdity of how medical care is billed and paid in America), I've created a page with the same title as this post where I've posted a simple spreadsheet roughly showing the costs for my treatment. There's a link to it over on the right. 

And for the record, I should've stuck with Group Health. Oh well...

Thursday, April 2, 2015

My New Vicious Circle

My current daily agenda:

1. Wake up tired.
2. Go to work.
3. Come home from work exhausted.
4. Take a "short" nap which becomes a very long nap.
5. Wake up, eat dinner, do chores, watch TV.
6. Go to bed very late.
7. Return to step 1.

I'm not sure it's the fault of the cancer, but the cancer certainly isn't helping me break the pattern. 

Wednesday, April 1, 2015

If Richard Sherman Says It, It Must Be True

If you live in Seattle and watch television, you've no doubt seen the commercial I've embedded above for the Swedish Cancer Center.* I'll give you a moment to watch it and be inspired.

Feeling inspired? If not, feel free to Google "youtube swedish cancer personalized medicine" and you'll find a host of similar commercials in their campaign -- including one featuring Seahawk Richard Sherman -- that you can watch and come away feeling like the cure for cancer is own our doorstep. A little DNA analysis, some "personalized medicine," and poof! -- cancer cured.

Yeah, not so fast.

Swedish isn't the only cancer doing gene analysis on tumors, and when I switched to the SCCA my oncologist there ordered a sample of my tumor undergo genetic analysis -- or, rather, "targeted genomic seq analys," procedure code 81455.* You might be surprised that I have this information so close at hand, but I got a letter from my health insurer which provided me with the identifying information for this test. The letter also explained that "Coverage of the above procedure code(s) is denied because Regence Medical Policy determines the service to be investigational due to the fact that the published clinical evidence is insufficient to conclude that this procedure is effective to improve outcomes." 

Fair enough, but now I have questions:

If the statement in the letter is true, why is Swedish running around telling the cancer patients of Seattle that this genetic testing is the secret to better treatment outcomes? Wouldn't this fall into the category of false advertising?

Additionally, regardless of the validity of this testing, given the healthcare environment in which we all operate, and the assumptions we all make about the distribution of costs, it seems a little off for Swedish to be pushing care for a potentially terminal disease that most patient's insurance won't cover.

And why do the two oncologists I've seen both think that genetic testing does improve treatment if the "published clinical evidence is insufficient"? Are the doctors convinced it helps not publishing? Or do doctors and insurance companies operate on different standards of sufficiency?

Oddly, one of the doctors I saw said that the real advantage of the testing is that it prevents them from giving you drugs that don't work. Standard treatment is to give everyone with my cancer the same chemotherapy drug, but it doesn't work on people with a particular genetic mutation. They find the mutation, they switch to a different drug. You'd think the insurance company would be persuaded by that argument, given how freakin' expensive the drugs are.

Ah well. I'm just a patient. What do I know? Well, I know I'm probably going to get a multi-thousand dollar bill for some DNA testing, but that doesn't really count. And circling back to where this post started, I also know that there's something about the way Swedish markets its cancer center that seems wrong to me.  

* It's weird to think my tumor is just sitting in a jar** somewhere waiting for someone to poke at it. 
** Ok, yeah, it's probably not in a jar, but you get my point.