Sixty

I honestly thought I would not make it to my sixtieth birthday, but here I am. It's been 3 1/2 years, give or take, since I found out I had high-risk multiple myeloma, and I feel pretty good. We spent the weekend in Maryland, with Mom, Karen, Aaron, Rosie, and Lee, celebrating Mom's 90th (February 15) and, secondarily, my 60th (February 19). The weather wasn't great, but the company was. We watched some old 8mm movies my father had shot, talked about family members past and present, ate, and talked some more. Mom's doing great, by the way, as are we all.

Coming back home, the weather has been no better. Cold and wet. Sunny was ecstatic to be released from her brief captivity at the vet's, and to celebrate we went on an extended afternoon walk, almost 5 miles, in Turkey Run Park--my favorite among the amazing set of parklands established in the last 10 years along Floyd's Fork, south and east of Louisville but close enough for an impromptu visit.

Although the weather wasn't great, good clothing always moderates the pain. So we dress appropriately.

Sunny didn't really need her jacket today, but I needed mine. Tonight we celebrate with good bourbon, lamb burgers on the grill, sleep. Tomorrow is another day (!).

Ray

I've been blessed with a few, exceptional, mentors in my career. Academia is full of bogus mentors, more bent on building their own careers than developing the next generation of scholars (I'd say they know who they are, but in fact they generally don't). Real mentors love the dialogue between mentor and protege, rather than loving their own monologue.

I need to work backward on this post, for reasons that will become apparent shortly, and I don't intend to cover the whole set of mentors here. I've mentioned Liz, of course. Others deserve attention, and I plan to honor them all. But Ray White, who died in October, deserves his own memorial. Official obits can be found here and here, so I will not recount the details of his life and achievements, though they are many and impressive.

Liz and I moved to Utah largely because Ray was there. Ray had given a talk at Northwestern in 1985 explaining his vision for the soon-to-be Human Genome project, drawing in part from the development of molecular genetic technology and in part from the genealogical resources available in Utah. Liz found a post-doc in Human Genetics--Ray was Chair of that department. I was just hanging around at the time.

When we arrived, in the Fall of 1986, the atmosphere at Utah was amazing. The emerging promise of genetics was happening on the ground, and everything else seemed small in comparison. There were battling teams, strategies, approaches, and the stakes felt (and were) high. Ray White was the high point, and both positive and negative energy flowed around him.

Any chat with Ray was stimulus for deep thought, some of which I have not yet progressed all the way through. He was enormously confident in the progress of genetic technology and in his (and his team's) ability to surf that technology to great achievement, very very soon. I was not a member of that team until very late in Ray's stint at Utah, at a point when many of the original members of his team had either gone on to great jobs at other places, or found themselves suddenly interested in extricating themselves from a fraught political battle that Ray was losing at the University of Utah. I knew of the battle, and how it would likely go, but found the prospect of working on the projects that we were trying to hatch so stimulating that I never really considered alternatives. I had a lot of confidence of my own--probably a little too much, in retrospect.

He was tall, handsome, charismatic, overweight. There was no doubt you had to bring your A game to any conversation with him. I'd had a little time to develop some ideas and found him willing to listen, from which developed a relationship that was much more about sharing ideas than about successful projects. The ideas were good, but a few years ahead of the technology, and seriously derailed by the post-9/11 internet collapse. We were basically talking 23andMe, but the underlying tech wasn't there yet, and no one wanted a biotech IPO right after 9/11 when the (first) tech bubble burst.

So it all fell apart. We collected a lot of DNA samples from families at high risk for cancers of several kinds, mostly prostate, breast, and colon cancers. The biotech company that was funding the work (DNA Sciences) folded suddenly in February 2002 before any useful amount of genotyping was done (using what is in any case ancient technology by current standards). At the same time, new technologies made family studies look uninteresting and NIH didn't want to fund us. We got some money from the Komen Foundation to do detailed genotypes for the breast cancer families, and have struggled even to get that work published (but you can read it here). Nowadays you would sequence them all, and have a more definitive story to tell. It can still be done, but the take home message is the Anna Karenina principle--that all unhappy families are unhappy in their own way--and the otherwise praiseworthy mania for replication of biomedical studies is a complication: if each high-risk family has a different mutation of a different gene (or non-gene), it's exceedingly hard to find another example of the same thing with the same effect. Or a similar-enough thing with a similar-enough effect.

None of that is Ray's fault, of course. He understood a great deal more about how this would all play out than I did at the time. I'm still catching up, but likely won't ever get there. I'm grateful that I was able to spend so much time in his company.

Winter

Thanksgiving, 2018 was spent in the Berkshires of western Massachusetts, in the company of Liz, Rosie, Lee, Fay (Lee's mom), Will (Fay's brother), and Felix (Rosie's hound/pit bull mix). It was cold, snowy, and sweet. We dodged flying into a winter storm by an hour or so, and the weather deterioriated for the next few days, from snow to sub-zero temperatures.

We had a nice, slightly Gothic, AirBnB in Stockbridge, Massachusetts. Felix and I, who have not lived together since 2014, have a relationship that might be considered co-dependent if we spent that much time together: at dawn, he makes some whiny noises just in case a human will respond. I will, needing to get out of bed around 7 AM under any circumstances. That leads to a bowl of food and a walk. We both like this very much, although I don't know how disruptive it is to his normal routine. On Thanksgiving, the 7 AM temp was just about 0. I'd looked at the forecast before packing, and was prepared, with a down jacket, heavy gloves, a hat, and insulated boots. The dog gave up before I did-- a small, rare, victory.

A shout-out to Will Baird: your songs (and guitar accompaniment) are sounding great.

After the turkey, and the turkey tikka masala, we headed to Vermont, to visit my cousin Barbara and her husband Michael. I love every trip to Vermont, and wonder why we don't seriously consider moving there (mud season, possibly?). Michael was putting up his Christmas lights, and I pretended to help. Truthfully, I probably attached more lights in 20 minutes or so with Michael than I had ever previously set up. He's got it all worked out in advance--without my "help," he would probably have finished in 10 minutes, and gone on to something else. We watched old silent family movies, transcribed to modern digital formats--many more to come, and sampled some excellent local beer and non-local whiskey.

The next stop was Frederick, MD, home to the last of the Kerber-Bogar clan. We had some fun, a couple of nice meals, and serious appreciation of Mom's watercolor paintings. A fancy dinner (with martini) might have been a bridge too far, especially when we got a call from Mom at 12:30 AM--'I've got a nose bleed and I can't stop it'. For context, Mom was the only one of the four of us who didn't have nosebleeds. She says that she was squeamish about blood, but that can't be right--Karen and I both squirted blood out of our noses as if we were in some kind of contest, and Dad (also prone to nosebleeds) was at work for most of that time. I guess Mom just couldn't imagine blood coming out of her own nose. Fair enough, but the oxygen apparatus, and the transition to Winter, are most likely enough to change the equation. We spent 5 hours at the ER. There was nothing really wrong.

Then we got a dog. We call her Sunny, because sunny is something we need around here this time of year. She is a smallish (30 lbs) hound mix--almost certainly Treeing Walker Coonhound, mixed with beagle or something small, but hound like. She is sweet, energetic, and definitely a hound. She was also not entirely house-trained at the time we adopted her. She has a great howl, which she should learn to use more sparingly.

In any case, the adoption of Sunny has derailed any number of projects (including this blog). Here I am in mid-January talking about Thanksgiving. A major motivation for me in getting a dog was to walk. I got more than I bargained for: we have been averaging 5-6 miles of walking every day. I have had to upgrade shoes and insoles more than once this month.

Felix looks like a larger, stronger version of Sunny, but he is not as insistent about getting his way, nor quite as athletic or ingenious about getting it. She likes a car trip, but would prefer to sit in the driver's lap. Seat belts will not contain her--in three consecutive days, she found three different ways to escape seat belt restraints: 1) press the button; 2) back out of the harness; 3) very slowly push forward so that the inertia lock doesn't kick in and you can just squeeze between the front seats and sit in dad's lap. So I got a wire grid to contain her in the back of the SUV. That has worked thus far, but today she removed the cap on one of the screws that holds the grid against the head restraints. I think she still won't be able to unscrew the bolt, but we'll have to see.

confessions

ALMIGHTY and most merciful Father; We have erred, and strayed from thy ways like lost sheep. We have followed too much the devices and desires of our own hearts. We have offended against thy holy laws. We have left undone those things which we ought to have done; And we have done those things which we ought not to have done; And there is no health in us. But thou, O Lord, have mercy upon us, miserable offenders. Spare thou those, O God, who confess their faults. Restore thou those who are penitent; According to thy promises declared unto mankind in Christ Jesus our Lord. And grant, O most merciful Father, for his sake; That we may hereafter live a godly, righteous, and sober life, To the glory of thy holy Name. Amen.

When we went to church (almost all Sundays until Dad got horses as a religion), we attended services at a small, "low church" Episcopalian congregation called St. Paul's (I think about half of Episcopalian churches are called St. Paul's). I was not an enthusiastic church-goer at any age (nor was I enthusiastic about going to school, ironic in the extreme given the 22 years I ultimately devoted to the task of being a student--never mind the 27 I devoted to being a professor). Maybe "devoted" is a little strong, then. If you know me well enough, you might feel entitled to substitute "endured." Otherwise just go along with the premise here--we'll get to the punchline before too long, I hope.

There were some positives, though. The priest (we would never have called him that), John Norman, was brilliant. He had an artificial leg, the result of a war injury (I don't remember whether it was from Korea or WWII), but I didn't know about it until I saw him at the bowling alley. Because of the prosthesis, he had a truly distinctive bowling style, but I think he was the best bowler on the St. Paul's team (I suspect "having a bowling team" is sufficient to make a congregation low church,  but if not, the fact that the one-legged Reverend is the best bowler on the team should seal the deal). He had a lovely singing voice (at least in comparison to the rest of the congregation), a liberal world view, and a good sense of humor.

I could never buy the cosmology. I didn't like Sunday School. I never felt that anyone could justify the extremism of Heaven vs. Hell in a way that was at all consistent with Jesus' message about loving neighbors and enemies. There was almost something racist about it, although I didn't see that at the time. I was not reassured that God (who sent people to Hell!) would be great company for eternity.

But I did love a puzzle. I was especially puzzled by "turn the other cheek." I was bullied a bit in school, although I wasn't small enough at prime bullying ages to be a great target (I was a lousy fighter, though, if they only knew). I'm still unsure about TTOC as a tactic, but I am certain about it as an ethical principle. You could see it, and many do, as a justification for cowardice, but I think the key distinction is that TTOC applies when you yourself are attacked; heroism and cowardice apply when others are attacked and you are called to defend them. 

We have left undone those things which we ought to have done

The General Confession is one of the great committee-written passages in the English language. Properly executed, it's also one of the great pieces of theater. I've done no research on this, but I suspect it was really written by one or maybe two talented poets or playwrights. The whole congregation (and the priest, as I remember it) recites this in unison. It's general enough to cover all the cases, but certainly made me feel personally responsible for "the devices and desires of my own heart" and it still does--almost as if Jean-Paul Sartre had written it.

As I approach the end of my life, I am not worried about Heaven or Hell (they are fiction, people!), but I do feel a need to come to the aid of those who have been attacked for no reason. There are so many, and it's not at all clear how to sort them. Also, it's not clear to me how I can help. Confusion is the first stage of cowardice. No one plans to be a coward--they simply freeze when confronted by decisions that range from difficult to impossible.

My wife has been attacked, repeatedly. So has my son. I'm sure that many people I know have been attacked in many ways, but haven't told me about it. And so many people I have never met and never will have been attacked in so many awful ways. What am I to do? It's a little late to grow a superpower (BTW why no cancer-based superheroes, Marvel? I think it's at least as plausible as Spider Man), so speech is probably all I've got. Gonna keep speaking, and I'll take suggestions.

the Medicare experience

As of October 1, I am officially a Medicare recipient. After two years of Social Security disability, you are automatically enrolled in Medicare. I reviewed my choices in a previous post, and ended up choosing a "Medicare Advantage" (part C, for Medicare geeks) plan offered by Humana for several reasons. First, and ultimately most important, Mayo is in-network for this plan. Anyone who cares should watch the recent Ken Burns documentary on Mayo, which does a good job of explaining the difference between my experience as a patient at Mayo and my experience everywhere else.

Second, the plan, like other part C plans, has an out-of-pocket max for any outpatient procedures. A quick review: Medicare part B pays 80% of outpatient procedures. My future life might include outpatient procedures (infusions or even injections) that could soon total $1 million (or merely $500,000) each year. One or two hundred thousand dollars each year out of my pocket. And these would likely extend my life, so I could keep up the payments. What a system!

Or I could be treated with pills or capsules, as I am now. That's Medicare part D, of course. Totally different deal. There's a deductible, a limit, and the famous "donut hole." But my meds blow through all those things the first month, and I enter the "catastrophic" coverage category. In this category, I pay 5% and the feds pay 95%. Of whatever the pharmaceutical companies say they need--Congress specifically prohibited negotiation of these fees. Five percent doesn't sound like much, but it's about $20,000 to me for the drugs I'm currently taking--not to mention a huge subsidy to pharma, courtesy of Uncle Sam.

Anyway, I made the transition this month. Not without trepidation--but it all has gone smoothly so far. It involved some phone calls, to my previous insurers, to Humana, and to my local hematologist's practice. Of these, the surprise was that the local hematologist's office had an insurance coordinator who was actually quite helpful. The pills I take (Ninlaro and Revlimid) don't come from the Rite Aid down the street--they are supplied by a specialty pharmacy. Every month, I arrange for the next shipment to come, which involves about a half hour on the phone with a pharmacy rep, followed by special instructions for Revlimid given by an RN. The drugs are generally delivered the next day, signature required. I learned that I had a choice about which specialty pharmacy to use, that my hematologist's office had a preference (Kroger!), and . . . something else.

She could help me get a "grant" from a "foundation" to help with my massive copays. Just like that. In fact, she said she'd make a few calls and get back to me. An hour or so later, she called back to say she had in fact secured me a grant for $10,000 from the HealthWell Foundation. 

That was easy. Does anybody smell anything? The HealthWell Foundation is indeed a 501(c)(3) charitable foundation that gives a very high percentage of the money it raises directly to patients like me. There are a number of other foundations just like it. I haven't dug deep yet, but it sure looks as though these foundations are primarily funded by pharmaceutical companies. They benefit the companies by providing a tax deduction, but mostly by encouraging patients like me to choose more expensive drugs that would otherwise leave us with huge deductibles. A side benefit might be to reduce the political pressure to lower prices. It's not affecting my choice, because I am fortunate enough to be able to afford the choice I've made (and frankly the other options are really expensive, too). Ultimately the tumor cells will make the choice when they stop responding to the Ninlaro or the Revlimid (or both).

The latest labs say that's not happening yet, probably. It's true that kappa is up a little from its all-time (post MM) low in June, but it would take a much bigger increase to get the hematologists' attention. The kappa/lambda ratio is 2.3, still quite low. Platelets and red cell counts are still lower than ideal, but not so low that they are causing any real problems. Otherwise things look great.

Ups and downs

It's been a little too long between posts, which usually means that nothing has happened, but that's not  that exactly the whole story. We've haven't done any major traveling since our trip to Yellowstone, and that's a shame because the weather this summer in Louisville has been anything but pleasant. We have managed to find a weather pattern that combines week-long hot dry spells with periodic bursts of very heavy rain. Drought and flood take turns, and going outside manages to combine intensely hot sunshine with dew points comparable to those of rainforests. I was going to say redolent of rainforests, but really rainforests smell much better (in my limited experience). Here's what my phone was telling me it "felt like" in June:

Now, I don't think it felt that bad, because I think that 130 degrees would feel a lot like dying, and it wasn't really quite like dying. Also that weather station might have been a little under the weather itself. But it was damned unpleasant, anyway. Also, that was at 7:30 PM!

(Almost) enough weather. I'm writing this as Hurricane/TS Florence is doing its best to wash away the Carolina low country. We had a visit from the remains of Gordon last week, which caused our basement to flood (a recurrent problem, but we remain optimistic that there will be way to solve it that doesn't involve setting up wading pools under the leaky gutter:

The only catch is that you have to empty them every 5 minutes or so. It's a minor issue compared to being trapped in a flooded house with no way to get out, but this is Kentucky for God's sake.

So I went to see the hematologist at the beginning of August, and everything looked good, except my hemoglobin was low. That's a recurring problem for me, the result of never having quite enough red blood cells post-transplant. We have traveled back and forth between high and low elevations this summer, with one long trip from late June to mid-July, and a short trip at the end of July. The longer trip resulted in a brief period where my hemoglobin was actually in the normal range (breahting thin air results in increased production of erythropoietin, which stimulates the bone marrow to produce more red blood cells). The erythropoietin spikes quickly, but it takes a long time for the marrow to actually ramp up production. I guess we were on the road long enough on the first trip to get some real improvement. And I felt it.

The second trip, when we flew to Jackson, spent 4 days in Yellowstone, and flew back, apparently had the opposite effect, leading in just a few weeks to the lowest hemoglobin reading I'd had since recovering from the second transplant. And I felt that, too. Still riding my bike, but definitely getting more winded. Even climbing the stairs  could get me breathing hard. Meanwhile the Kappa protein in my blood had ticked up just a little bit, which got me to the medical literature in a hurry. What constitutes a relapse? I was pretty sure it took more than what was happening, but hadn't ever really looked at the definitions.

I was reassured to find that the change in Kappa was an order of magnitude smaller than what would be considered clinically significant. And surprised to learn that a drop in hemoglobin as large as the one I had experienced was considered an indication of clinical relapse. So I scheduled a new appointment with the hematologist. Yet another surprise--actually two--1) nobody was worried about my hemoglobin (except me), and 2) while my hemoglobin had recovered somewhat, a couple of liver enzymes (AST and ALT, especially the latter) were well above their normal ranges. In 3+ years of obsessive cataloging of lab results, these numbers had barely budged, so it seemed that something was up.

I won't say that I'm not one to jump to conclusions, but Louisville is currently home to the most significant hepatitis A outbreak in the U.S., and I was certain that I had hep A. The hematologist was not convinced, and told me to stop the chemotherapy regime until further notice, and ordered some C/T scans of liver and bone, as well as a complete set of hepatitis (A/B/C) tests. In the end, everything was negative, and the liver enzymes came down on their own. I've resumed chemo, and the last set of labs looks just like all the others (except the anomalous August results).

It was maybe just a passing virus or something.

Yesterday I did a "Bike the Bluegrass" tour, a charity ride for the local chapter of the American Lung Association. It was in an area of northern Kentucky that I had passed through or around, but hadn't explored at all. Really beautiful rural country, with blessedly little traffic. My companions were younger by one or more decades. Mercifully, the most enthusiastic 2/3 of them had the option of completing a 100 K course instead of the 60 K ride I chose, which was more than enough for me. It was ungodly hot and the uphills were surprisingly challenging. I was reminded again that I need to add one or two lower gears to my bike if I wish to continue doing this sort of thing. But there were no disasters, no broken ribs, and some really sweet descents to match the grueling climbs. I just hope they schedule it for a few weeks later next year.

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.