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.

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). 

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. 

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

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...

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. 

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.