Ghost cat

When we got back from a recent road trip, there was a dead bat at the foot of the basement stairs. I’d never seen a bat up close like that. Alive, the darting flight path left no space for study, and primal fears kept me jumpy to a useless degree. The dexamethasone is no help, either, when it comes to jumpiness. This bat was going nowhere, however. It lay on its back, wings drawn up tight on either side, teeth tiny but brilliant in the light. The house is old--90 years or so--but pretty tight. Hard to say how the bat got in.

I bagged it and sent it out to the trash, not wanting to risk exposure to some interesting bat disease. As I came back into the kitchen, it occurred to me that not very long ago (last summer?) we’d returned from a trip to find a mouse carcass in the same place. It’s that location that’s interesting. Not some dank corner (trust me, there are many), but out in the light of day, right where it will be spotted as soon as you come home and are looking to see if there was any wine left before you went away. 

Two deaths, small furry animals left at the foot of the steps. You can see where I’m going with this. It almost has to be a cat. Of course we don’t have one--haven’t had one since Eddy died 26 years ago.

I’m not against the idea of a ghost cat. Especially if it actually catches mice (lay off the bats, though--we’re having some issues with those). Our nephew Sam has a ghost cat, sort of. Actually it’s a real cat that lives in their basement and only surfaces when their children go to bed. Sightings are infrequent, to the point that neither Liz nor I can remember its name. It doesn't seem to possess any supernatural powers.

Not the ghost cat, probably.

Ghosts have other uses besides catching mice. I’m rereading an old Anthropology classic (Mary Douglas’ Purity and Danger, for anyone who cares), which has helped remind me that ghosts often serve as intermediaries not so much between the spirit world and the physcial world, but between what actually happens, for better or worse, and what we think should happen. Or between what we can explain and control, and what we can’t. Ghosts, witchcraft, sorcery--they take up the explanatory slack, relieve you of some personal responsibility, and sometimes can give you a plan of action, or inaction.

Not so much in this case, I guess. I’d like to assign responsibility to the ghost cat, but in truth should probably try to figure out how the bats are getting in. Liz found another ex-bat just around the corner, probably a bit older than the first, and the night before last we were watching TV downstairs when we received a visit from a very much alive (and presumably non-ghostly) bat. Bats have enough problems without our basement becoming a bat death trap.

Travels

Liz and I have put many, many miles behind us this Summer. We drove out to Colorado for Frankie and Emily's celebration, north to Mount Rushmore by way of Rocky Mountain National Park, then wandered through the Black Hills, Badlands, and Sand Hills before resigning ourselves to crossing the prairies to get back to Kentucky. I figured the drive was about 3300 miles not counting side trips. We took our time, saw all kinds of things we hadn't seen before, and returned relaxed and happy, although Louisville had appraently remained very hot and steamy during our absence, and showed no inclination toward moderation after our return.

So when we got a text from our old friend John Schaefer inviting us to camp with him and his wife Cathy in Yellowstone last weekend, we could not dismiss it out of hand. In fact, we couldn't see why we shouldn't go--so we did. Cashed a few frequent flier miles for round trip tickets to Jackson, rented a cheap car, and experienced Yellowstone at its peak tourism season. This is surprisingly tolerable, even transcendent, if you know what you are doing. John and Cathy have been doing this for a long time, and we joined them when we could, the last time being in October of some year like 2006 or 2007. We'd always waited till the "tourists" had gone home.

The park itself has changed in the years since, mostly as a result of forest succession since the horrific fires of 1988. I'd never seen the park until some years after those fires, so my entire experience amounts to watching the new growth take over, along with concomitant changes. Some things haven't changed, like gaper's block for elk or buffalo, but others have changed a lot. Full disclosure here: I'm not primarily moved by the geysers, hot springs, boiling pots of toxic chemicals, and so forth, that Yellowstone is famous for. They are amazing to witness, but to me they seem every bit as scary as industrial disasters left by humans as a by-product of coal, steel or uranium production, say. But they're thought-provoking in the sense that they can allow ourselves to see our own massive toxic contributions to the planet as part of a continuum that existed long before we did. Maybe that's not helpful.

The biology is fascinating to me, though. On our earliest trips to the park, the scorched earth and dead trees dominated the visual landscape, but the enthusiastic growth of the next generation (knee- to shoulder-high at the time) was impossible to miss, and the large mammals were much easier to spot at a distance. Now, 30 years later, many (millions?) of the dead trees remain standing, many still taller than the new growth in spite of having lost tops and middles over the years. The young trees in many places are propping up their dead ancestors. It's easy to see how some slopes and basins support much faster, denser growth than others, and how the character of others has changed completely.

We saw monumental traffic snarls caused by just a few elk grazing on the banks of the Madison River, and were caught in some animal-caused jam for a half hour, the specific cause of which we never did identify (let's assume it was a grizzly bear to make it seem almost worthwhile). An old bison bull wandered through the campground on his way back and forth to the river, but even bison sightings were (for us, at least) down from previous visits. This maybe is typical of Summer, with so many more people jamming the roads, but it's also true that the hiding places have improved a lot in thirty years.

The last time I visited, brook trout were abundant and aggressive in small upcountry streams. Willy and I could race to any miniscule pool, put any fly down anywhere with any level of grace, and have 7-inch fish landed (and returned) in less than a minute--then on to the next pool. It was a sweet experience (for the humans at least), especially with a kid--and brook trout are beautiful fish--but they really are (were?) an invasive species for Yellowstone, or anywhere out West.

John and I revisited one of those streams this time and found that the brookies were gone. With only a little more care and time, we found ourselves similarly entertained by native Yellowstone cutthroat trout. Those are the fish that brook trout replaced, out-competed, and not infrequently ate. This must represent a big commitment by NPS. We are required to return a cutthroat, and encouraged to keep (= kill) brookies, rainbows, and browns (none of which are native). Apparently the campaign is working, at least in the upper Gibbon River. I hope the cutts can learn to eat more mosquitoes--a major untapped food resource in the area. Here's John's first fish caught with a Tenkara rod.

Liz

I put on some old music: Cry Cry Cry's cover of James Keelaghan's "Cold Missouri Waters," itself based on a true story by Norman MacLean (Young Men and Fire). All of which reminded me of Ivan Doig's memoirs (This House of Sky) and novels (English Creek especially) about settling out West back when that was a much trickier thing to do. Now our considerations are whether there is a Medicare Part C plan available that covers all the things we need to have covered, whether there are decent local hematologists, and how much a house costs.

It's worth being reminded how much a life-or-death struggle it used to be just to settle in a place--a life-or-death struggle not mediated by conflicting federal and state laws so much as by the usual elements of life and death, like extreme cold and lack of drinking water.

We're out West again, on a somewhat rambling odyssey which has taken us so far (pretty far) across Indiana, Illinois, Missouri, Kansas, and Colorado from south (San Luis Valley) to north (Steamboat Srpings). We're planning to finally make use of Liz's lifetime National Parks pass in Rocky Mountain National Park, and continue from there to Mount Rushmore by way of Nebraska's Sand Hills and South Dakota's Black Hills. Unless we get sidetracked by something else.

When we're out West, as we have been for a little over two-thirds of our time together, I am frequently reminded of how much I have been Liz's student, in academics and especially in life. I've always loved being a student, and of course I've been pretty good at it. Notwithstanding some qualities that have been irritating to my teachers (most of them relating to a need to be a smartass or at least a know-it-all). I've learned things from bad teachers and good ones, but I'm pretty certain I managed to irritate them all at times.

Liz introduced me to the books and authors mentioned above, along with a host of others--Jim Harrison, Wallace Stegner, George MacDonald Fraser, Peter Matthiessen . . . moreover, she took me out West, endured my whining about how much the backpack weighed, and showed me the finer points of hanging out by a fire at 11,000 feet while watching trout leap by the thousands, and appreciating the serene and ugly grace by which a young moose swims across the lake paying no mind whatsoever to us or the trout. She took me skiing for the first time (with Polly and Barrett, Martha, and Barrett's brother Bob and his wife Vivian), New Year's 1985, in the backcountry around Ouray, Colorado. I was so amazed by real big mountains that I took dozens of shots (back in the day when we were consuming actual 35mm film) of the same few peaks.

More than all that, Liz taught me what I could absorb about being with people. I'm not exactly a natural in social contexts, but I learned, somewhat late in life, at the feet of a master (from a long line of masters). Most of the time I can hold my own in a variety of milieux that would have reduced a younger (pre-Liz) version of me to pure social cowardice. Liz has helped me cultivate a sense of adventure, which was present but not fully realized, in academics, the outdoors, social interactions. More to come on all that.

Stupidest reason ever to get rid of your land line

Now that I'm not actively posing as a professor, it's easier to let out the deep, dark secret that sometimes I am exceptionally stupid.

The latest example is not only humbling in the extreme, but relevant to the subject of Medicare, drug costs, and the absurdity of our health care "system."

When we last spoke, I was trying to figure out how much it would cost to keep myself alive under Medicare, with various options and allowing for possible future changes in the drugs I take (and how they are delivered). Medicare supplemental ("Medigap") insurance looked like an attractive option, until I found out that Kentucky outlaws Medigap policies written to those under 65 (I haven't researched the rationale for this yet, but guess it involves fraud).

Nevertheless, I spent hours looking for quotes on Medigap policies, and getting increasingly frustrated. At some point, my eyes rolled back into my head, and I clicked on a website that I had been dodging for hours. I won't even put the name here, to limit collateral damage. Suffice it to say that it contained "medicare", the name of a large health insurance company, and "solutions". I KNEW this was a trap, but I was no longer functioning rationally. So I gave this obvious cybersquatting scumbucket my home phone number, name, and email address. It was like an out-of-body experience.

In less than a minute, the phone began to ring. I realized my mistake, but that wasn't going to do me much good. What's more, the calls weren't coming from one or a few places--they were coming from all kinds of different phone numbers, each connected to a boiler-room operation selling insurance (they didn't even generally know what kind of insurance I was "looking for"). I hung up on some, didn't answer others, concluded that the only short-term relief was to disconnect the phone, which I did. Took some deep breaths, and recalled that our landline was used only by two people whose contact we valued: Liz's mother (Fran) and our daughter (Rosie). Rosie calls regularly and she likes the randomness of calling the house rather than one or the other of our cell phones, but will get over it. Fran calls less often, and can easily be transitioned to calling Liz's phone, which I might pick up if it's not in Liz's possession anyway.

And we can save $30 a month! Not much downside, I guess. But I can't really feel positive about the change, under the circumstances. We (no, I) have been coerced by malign forces into a choice we (I) hadn't planned to make. Moreover, I played right into their hands. Once again, I have to wonder about how a person less informed, less educated, etc. can be expected to even survive in this environment. And now I'm thinking: I'm simply becoming one of those people I have been worrying about. I've got my Medicare card, my Social Security pension, my obsession with collecting the mail as soon as it arrives. I'm a goddamn senior citizen, for Christ's sake.

More Drugs

First, let's get the good news out of the way. I'm still responding to my very expensive drugs:

Note that this is slightly altered from the last one I posted. It's on a log scale (y-axis), which doesn't make a huge difference, but more importantly it goes back to the early days (late 2015). That makes it clear that the lambda number bounces around more than it has lately, while the kappa is essentially just declining. Ultimately I guess we'd like to see the two of them bounce around the same range indefinitely, and they're putting on a good imitation of doing just that now. The current ratio is 1.85 (plus or minus lotsa).

So the other day I got my "Welcome to Medicare" packet. I was expecting it, even though I'm not (quite) 60, because I've been on Social Security Disability for a year and a half and they put you on Medicare automatically at 2 years. I've spent most of the last couple of days trying to work out what's the best arrangement of Medicare parts to cover my current (and possible future) needs--and how much that will cost. I've got at least 3 reasons to go into excruciating detail: 1) just to make sure I can describe this monster, a good test of whether I understand it as well as I think I do; 2) to help anyone else, even if they're not facing some dread disease with outrageous drug costs, navigate the weird choices and nomenclature; 3) somehow I find this entertaining. Liz points out that indignation would be a better response, and I hope to make some contribution to the discussion of how that can/should be done at some future point.

So you all know what you can do if this is not interesting or useful. You may be young enough to hope it will all be cleaned up when it becomes an issue for you. Good luck with that.

Medicare has parts, labeled A, B, C, and D. A is for hospital care, B for outpatient procedures, D for drugs, and C (I like to think) is for confusion. In principle, A, B, and D are fairly straightforward in concept, although as we'll see the details can be anything but. C is also called "Medicare Plus" or "Medicare Advantage" and basically allows insurance companies to offer HMO or PPO plans that combine benefits from A, B, and D into a single plan. D also works through insurers rather than coming straight from CMS (that's the federal government agency responsible for Medicare and Medicaid). So while A and B have one government-issued list of benefits, C and D come in many flavors from multiple vendors. That's enough general background. Now for the fun stuff.

What I'm automatically enrolled in is A and B. B comes with a small monthly premium ($134). Under this scenario, the drugs I'm currently on (Revlimid and Ninlaro, never mind the others), not covered under A or B, would run (at current prices) $370,149 annually. So this is not looking like a great option to say the least.

So let's consider part D. There are multiple options here, but the best one offered locally is probably an Express Scripts plan (and I have such a nice relationship with their reps!). Here's how that would work for me. $27/month for the plan, $405 annual deductible, and big copays on Ninlaro and Revlimid, up to $5000. At $5000, part D's "catastrophic" coverage kicks in, covering 95% of drugs costs. I would easily blow through the non-catastrophic part of the coverage the first month, so for the rest of the year, I'd be on the hook for 5% of that $370,000 (give or take a few adjustments). So the drug costs with this plan come in at about $18,000--a big improvement, but not exactly cheap.

So what about part C? Again there are a lot of plans, but one of them offered locally (from Anthem) has 5 stars (from Medicare's rankings, about which I know very little, but it seems impressive). It's a PPO (preferred provider organization), meaning they cover out-of-network providers, just not as generously as in-network providers. More on that later (sorry!). The monthly premium is another $57/month on top of the $134 part B premium, but there are some compensating benefits, e.g., some vision and dental. The drug coverage is very similar to the part D plan above, but a little more expensive, coming in at about $22,000 for the year.

So it looks as though I'll end up about $20,000/year, give or take. That wasn't too difficult to figure out, but: what if something changes? I know it will, just not when. So let's review the disease status now--well-controlled but high-risk multiple myeloma. It will progress, and despite my current state of well-being, I am pretty far out on the survival curve at two years post-transplant and three years post-diagnosis. When it progresses, we'll reshuffle the drugs. Will we choose some old chestnut that been off patent for 20 years and has lots of generics? Hah! Actually I'm already taking that one (dexamethasone) and it's so cheap it's not even part of the discussion. Just this year, Velcade (bortezomib) has a generic competitor, making it the only one of the new class of much more effective drugs to age into the category of having competition. Generic lenalidomide (Revlimid) could hit the market in a year or two, unless Celgene's dirty tricks keep it away.

But realistically, I'm going to want one of the newer, better drugs (some of them really are better). One or more in this list, most likely: Kyprolis, Pomalyst, Darzalex, Empliciti, Farydak, Selinexor (if it gets FDA approval, which looks very likely), or one of the half-dozen or so promising drugs in trials now. The first two would replace Ninlaro and/or Revlimid, respectively. The others might be added. Some of these drugs (Kyprolis, Darazalex, Empliciti) are administered by infusion; the others are oral meds). And here's the thing I haven't mentioned yet: if a drug is infused or injected, it's covered by Medicare part B. At 80%. So a drug that lists for $200,000 (cheap!) would be $40,000 to me, and there might be more than one of those.

Stop me if this sounds like doing your taxes (it won't stop me, though). It turns out that part C plans have a hard stop on out-of-pocket costs. The Anthem plan limits out-of-pocket to $5900 in-network ($6900 out-of-network). So now the injectable/infusible drugs are suddenly much more affordable. They're not more fun (infusion centers are generally disturbing places to spend quality time, and travel is limited), but Darzalex in particular requires just one infusion a month and the longish-term results look very, very good. Kyprolis is probably also an upgrade over Ninlaro in terms of efficacy if not convenience.

But wait! There's Medigap (supplemental insurance), too. This comes in a dizzying variety of forms, again from a variety of insurers. Just to be helpful, they are labeled with letters from A to . . . something, and there is no relationship between Medigap plan A and Medicare part A (or B, C, D, etc.). The relevant one for me would be plan "F," because it would cover all my copays for injectables. Premiums are age-dependent, and follow an interesting pattern--high (around $400/month) for ages < 65, suddenly dropping to ~ $150/month at 65, then rising slowly. The reason for this is grim, but clear: the only people in Medicare under age 65 are people like me who are either very ill or very likely to become very ill in the near future. Most of the people who get enrolled in Medicare at age 65 are comparatively just fine. Another consideration is that you really have to sign up for Medigap insurance right away, or you will have to pay penalties and may be denied coverage.

So this post has gone on much longer than I anticipated. Sorry. Also, it's not like I've worked myself up to a clear choice at this point. As I see it, there are 3 contenders: A + B + D, which costs the least now but leaves me open to potentially outrageous expenses for injectables; A + B + D + Medigap F which costs the most now (but will drop if/when I reach 65); and C which costs a more now than A + B + D but limits how much any future injectables will cost.

Rough annual cost for A+B+D+Medigap F: $24,540.
Rough annual cost for C: $24,292.

Amazing how that works!

Future realistic scenario 1: Darzalex added, nothing dropped. I'm having trouble getting a street price for Darzalex, but it's safe to assume it will be outrageous. It makes little difference to these calculations, as long as it's more than $30,000/annually (a very safe assumption).

A+B+D+Medigap F: $24,540.
C: $24,540 + $5900 = $30,440.

Future realistic scenario 2: Darzalex and Kyprolis added, Ninlaro dropped. This essentially drops the cost under each plan by the same amount, about ~ $10,000. Adding the second expensive injectable changes nothing. I just get to hang out at the infusion center a lot more.

A+B+D+Medigap F: $14,540.
C: $14,540 + $5900 = $20,440.

So I guess the winner is A/B/D/F, although there are a few things I haven't tested yet (like will these insurers really sell me a policy)*. And lots of things I've undoubtedly missed. Stay tuned for further information (and anyone who wants to check my work, please comment).

*Update: well as it turns out, they won't, at least not in Kentucky, which requires that I be 65 to get supplemental insurance. So now it's down to C or moving to another state. Tempting!

Drugs

I've mentioned the cost of drugs before. The new drugs getting FDA approval for MM are all very expensive, including two of the drugs I take every month, Revlimid and Ninlaro. A quick review: Revlimid (lenalidomide) is a close relative of thalidomide, a drug famous for causing horrific birth defects in the 1950s, but which really started a revolution in cancer treatment, even though no one really has a clear idea of how it works. It's called an "immune modulator" (IMiD), indicating that it does something to the immune system (up? down? any particular cell type?). One company, Celgene, rescued thalidomide from the ash heap of pharma history and has developed its successors, Revlimid and Pomalyst (pomalidomide). The last two are still under patent, and more about that later.

The other class of drug that has revolutionized MM treatment (to date--more are on the way) is what's called a proteasome inhibitor. The first of these was Velcade (bortezomib), patented by Takeda Pharmaceuticals. Proteasome inhibitors are at least a little better understood from a theoretical perspective, and have a (relatively) good track record in treating patients like me whose tumors have dispensed with the short arm of chromosome 17, home to the TP53 gene, which makes the critical tumor suppressor protein called p53. Takeda has two newer proteasome inhibitors on the market now: Kyprolis (carfilzomib), and Ninlaro (ixazomib). I have been taking Ninlaro for about a year and a half; it's great advantage over the competition is that it's a capsule to be swallowed rather than something to be injected (Velcade) or infused (Kyprolis).

I know that you are all alert readers, and you have undoubtedly detected a pattern here. One company (Celgene) makes three different versions of one class of drug, and another company (Takeda) makes three different versions of another class of drug. All six drugs are still under patent.

Celgene, in particular, has gone to great lengths to protect its monopoly on Revlimid, which has become an essential drug for the vast majority of MM patients. Patent protection will end soon, so in principle generic versions may become available. But in order for a generic drug manufacturer to get its version approved, the prospective drug maker has to show equivalence between its drug and the real thing. Celgene has found a way to take advantage of the fear that thalidomide's history has engendered in (at least) two sneaky ways.

Each month's supply comes with special warnings that women of childbearing age must not handle Revlimid and that men who have sex with women of childbearing age must wear condoms. These instructions are written on the packaging, of course, along with the novel-length "patient information" packet that comes with a new prescription. But they are also delivered, every month, by a nurse either in person or over the phone. It's the same script every month, so after 20 months or so of the same speech it's not clear what the point is (from the patient's perspective). I'd been wondering if this scheme had been cooked up by the FDA, by Celgene, or if it represented some compromise between the company and the regulators. I still don't know, but what is clear from the NPR piece cited above is that this arrangement is working very well for Celgene--because they patented it! Not the drug or the formulation of the capsules (of course they have patented these as well), but the speech, the script, the warnings and the rest. So even if some other drug maker produces a generic Revlimid, the current rules will require them to license the "patient education" materials from Celgene. What's more, they seem to be using these safety concerns to prevent rivals from obtaining enough of the drug to show that a generic version is equally safe and effective. Amazing!

The Ninlaro story isn't quite as nefarious (at least not yet). From my perspective, the main difficulty is that Ninlaro is officially regarded as a kind of "me too" medication rather than a clear first choice for some particular kind of patient. So it is no longer on the formulary (the list of drugs fully covered by my insurer [Express Scripts]). A monthly dose of Ninlaro consists of 3 capsules, each with 4mg of drug. Each capsule carries a list price of approximately $4000. Off formulary, my copay would be about $2000 each month. At the beginning of the year I got a letter on University of Louisville letterhead informing me of this change, but giving me the opportunity to enroll in a program called "SaveonSP" that would reduce my copay to $0. Sounded like a good deal, so I enrolled right away. I expected some letter confirming my enrollment, and after a few weeks I called back to verify my enrollment, since I'd heard nothing. Sure enough, they told me, I was enrolled--there was nothing more I had to do. So imagine my surprise when I was told this month that I had a $2000 copay because I was no longer covered by the manufacturer's copay assistance plan.

After some long and only moderately contentious conversation with a customer service rep, it was finally (I hope) established that I was covered under the SaveonSP program, and hence did not actually owe anybody $2000, at least not until my coverage changes again. It wasn't that hard for me to get things straightened out, as a careful reader and obsessive keeper of documentation, but I can only imagine how difficult it would be for a patient with more advanced disease, less education, maybe some dementia, and fewer resources of all kinds to deal with this level of complexity.

Who pays for my drugs? Well, it depends. If they're injectable, it's my health insurance, if I can swallow them, it's my prescription drug coverage, if I need help paying a high deductible, I might qualify for copay assistance from the manufacturer (each having its own rules about how much they will pay and to whom), or maybe SaveonSP. Who is SaveonSP? Funny you should ask.

Apparently they're part of Express Scripts. I guess it's three different pieces: Accredo (also part of Express Scripts), the specialty pharmacy that actually fills the prescription, Express Scripts, the pharmacy benefit manager that pays the manufacturer for the drug, and SaveonSP that does whatever it is that they do. Do they always rely on patients to let the one hand know what the other hand is doing? It's a way to cut costs, I guess, since we are definitely not getting paid.

Told you so

Anyone waiting for an update on the lab values (and I have it on good authority that there is at least one such person) can now relax: the results are in.

Liz and I are working on relaxation in Edisto Beach, SC. It's a nice place, quiet for a beach town in the Southeast (= not a Spring Break destination). Lots of dolphins and pelicans to watch. A shame that I seem to have a problem with shrimp, but otherwise the seafood is good (though invariably fried). There is supposed to be a large native population of venus fly traps, pitcher plants, and the like, and even an island nearby with a feral population of rhesus macaques, which we hope to visit. We even have a view of the sunsets across St. Helena Sound. This was today:

Pretty sweet, until the no-see-ums started in.

But anyway, the labs. Here's the updated chart.


Kappa is still on its downward trend, maybe close to leveling out. Lambda is back to its previous level, apparently. The ratio is now 2.45. That's down from 2 months ago's 2.58, but not nearly as cool as last month's 1.11. These are results from two different labs, and without all the repeated measurements I would certainly be inclined to trust the Mayo 1.11 over the Baptist (Louisville) 2.45, but I don't have any specific reason to do so. I have plenty of results from Louisville now, and maybe enough from Mayo, to see if there is any consistent difference in results between the two. There are lots of possible reasons the results might differ, especially for the low-concentration lambda. Another reason to step back from each month's results and look at the bigger picture.